Child Health in the European Union

Full text

Child Health
in the European Union
Edited by Adriano Cattaneo, Laura Cogoy, Anna Macaluso, Giorgio Tamburlini
Institute for Maternal and Child Health IRCCS Burlo Garofolo
Health Services Research, Epidemiology and International Health
WHO Collaborating Centre for Maternal and Child Health
Trieste, Italy
Health and
Consumers

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European Commission
Child Health
in the European Union
Edited by Adriano Cattaneo, Laura Cogoy, Anna Macaluso, Giorgio Tamburlini
Institute for Maternal and Child Health IRCCS Burlo Garofolo
Health Services Research, Epidemiology and International Health
WHO Collaborating Centre for Maternal and Child Health
Trieste, Italy

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Contents
Page
List of Tables and Figures .................................................................................................... 5
Abbreviations ......................................................................................................................... 7
Authors and Contributors ..................................................................................................... 8
Executive Summary...............................................................................................................9
Introduction .......................................................................................................................... 15
Glossary................................................................................................................................ 19
1. Of Births, Deaths, Health and Well-being: An Overview .............................................. 21
2. Determinants of Child Health.......................................................................................... 30
2.1 Social and Economic Determinants.................................................................... 31
2.2 Social Policies and Health Systems as Determinants of Health ...................... 40
2.3 Exposures and Risk Factors over the Earliest Life Stages .............................. 49
3. Perinatal Conditions ........................................................................................................ 54
4. Congenital Malformations............................................................................................... 60
5. Neurological and Developmental Disorders ................................................................. 69
6. Mental Health.................................................................................................................... 77
7. Cancer............................................................................................................................... 84
8. Rare Diseases and Conditions ....................................................................................... 95
9. Other Conditions of Public Health Importance ............................................................. 98
9.1 Oral Health............................................................................................................. 98
9.2 Overweight and Obesity..................................................................................... 101
9.3 Diabetes............................................................................................................... 108
9.4 Cardiovascular Diseases and Stroke................................................................ 112
9.5 Coeliac Disease .................................................................................................. 115
9.6 Asthma and Allergic Diseases .......................................................................... 118
9.7 Visual Impairment............................................................................................... 122
9.8 Hearing Loss ....................................................................................................... 125
10. Communicable Diseases............................................................................................. 129
10.1 Communicable Diseases of Public Health Importance................................. 129
10.2 Tuberculosis ..................................................................................................... 135
10.3 HIV/AIDS ............................................................................................................ 139
11. Maltreatment................................................................................................................. 143
12. Accidents and Injuries................................................................................................. 150
13. Environment-Related Diseases .................................................................................. 161

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List of Tables and Figures
Tables
Table 1.1. Overview of temporal trends of main diseases and disabilities in children.
Table 2.1. Protective effect of exclusive and prolonged breastfeeding.
Table 2.2. Latest available national data on breastfeeding at different ages.
Table 2.3. Overview of exposures and risk factors and their impact on health over the first 12
years of life.
Table 4.1. Estimated number of deliveries with a congenital malformation in 2008.
Table 4.2. Well-established, not uncommon and modifiable causes and risk factors for congenital
malformations.
Table 5.1. Definitions of some neurological and developmental disorders.
Table 6.1. Typical age ranges (years) for presentation of selected disorders.
Table 6.2. Selected risk and protective factors for mental health of children and adolescents.
Table 9.5.1. Prevalence of coeliac disease in some European countries.
Table 9.5.2. Arguments in favour and against population screening for coeliac disease.
Table 9.7.1. Main causes of severe visual impairment in children in some European countries.
Table 10.3.1 Practices on antenatal HIV screening around 2004/05.
Table 11.1. Long term health and social consequences of child maltreatment as documented by
long term prospective studies.
Table 11.2. Risk factors for child maltreatment.
Figures
Figure 1.1. Total fertility rate, 1996-2006.
Figure 1.2. Infant mortality rates per 1,000 live births, 1999 – 2009.
Figure 1.3. Neonatal and post-neonatal mortality rates per 1,000 live births, 2006.
Figure 1.4. Infant mortality by cause, 2006.
Figure 1.5. Decreasing SIDS mortality per 100,000 live births in some countries.
Figure 1.6. Mortality rates per 100,000 children 1 to 14 years of age, 2006.
Figure 1.7. Very preterm birth by deprivation quintile.
Figure 2.1. Social and economic determinants of child health and their causal cascade.
Figure 2.2. Maternal employment rates by age of youngest child, 2007.
Figure 2.3. Proportion of people with income above and below 60% of the national median
income reporting one or more housing problem.
Figure 2.4. Trends in extramarital birth rates.
Figure 2.5. Parenting and nutrition, being in turn influenced by the wider social context, are the
most proximal determinants of child health and development.
Figure 2.6. Policies to address social and economic determinants of child health.
Figure 2.7. Relative child poverty rates* before and after transfers.
Figure 2.8. Family policy generosity and infant mortality.
Figure 2.9. Enrolment rates in formal and informal childcare/early childhood education in 2005.
Figure 3.1. Early neonatal mortality by country, estimates for 2004 or latest available year.
Figure 3.2. Rates of LBW and changes between 1980 and 2007.
Figure 4.1. Estimated annual number of deliveries associated with 14 selected malformations in
the countries of this report.
Figure 4.2. Elective termination of pregnancy (ETOP) to 1000 births ratio for all congenital
malformations and estimated number of ETOP per year between 2003 and 2007 in
selected countries.
Figure 4.3. Infant mortality rate per 1,000 live births and proportion of infant deaths due to
congenital malformations.
Figure 4.4. Time trend (3-year moving average) of gastroschisis per 1,000 births in five selected
countries with Birth Defects Surveillance Programmes.
Figure 4.5. Time trend (3-year moving average) of anencephaly per 1,000 births in three countries
with Birth Defects Surveillance Programmes.
Figure 4.6. Time trend (3-year moving average) of spina bifida per 1,000 births in three countries
with Birth Defects Surveillance Programmes.
Figure 4.7. Time trend (3-year moving average) of Down syndrome prevalence per 1,000 births
among live births in five selected countries with Birth Defects Surveillance
Programmes.
Figure 5.1. Percentage of children who need special education over all compulsory school aged
children; data provided by countries.

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Figure 5.2. Prevalence of headache, tension-type headache and migraine in school children in
some countries in different years and age groups.
Figure 6.1. Number of countries with budgeted and implemented policies and large-scale
programmes for child and adolescent mental health.
Figure 7.1. Crude annual incidence rates of childhood cancer per million children by country.
Figure 7.2. Relative frequency of childhood cancer subtypes by country.
Figure 7.3. Age-specific incidence rates by type of tumour.
Figure 7.4. Increase in survival probability over time by cancer type.
Figure 7.5. Mortality rates from childhood cancer over time; averages of countries with long-term
monitoring.
Figure 7.6. Mortality rates from childhood cancer in 1999 by sex and country.
Figure 7.7. Time trends of childhood cancer incidence rates in Italy and the Nordic countries.
Figure 9.1.1. Changes in national mean DMFT scores in Sweden, Portugal, Poland and the United
Kingdom between the 1980s and the first decade of 2000.
Figure 9.1.2. Tooth decay trends in fluoridated and unfluoridated countries.
Figure 9.2.1. Prevalence rates (%) of overweight and obesity (IOTF reference and cut-offs) at 4
years of age by country.
Figure 9.2.2. Prevalence rates (%) of BMI-for-age higher than 1, 2 and 3 SD (WHO reference and
cut-offs) at 4 years of age by country.
Figure 9.2.3. Prevalence of overweight plus obesity (IOTF reference and cut-offs) reported by 11-
year old boys and girls in Europe, by country.
Figure 9.2.4. Prevalence of overweight plus obesity (IOTF reference and cut-offs) reported by 13-
year old boys and girls 13 Europe, by country.
Figure 9.2.5. The complex web of individual, familiar and social determinants associated with
overweight and obesity in preschool children.
Figure 9.3.1. Trend in the incidence of type 1 diabetes in some European countries in three periods
between 1989 and 2003.
Figure 9.3.2. Age-standardised annual incidence rates of diabetes per 100,000 children 0-14 years
of age.
Figure 9.6.1. Prevalence rates of symptoms of eczema, rhinoconjunctivitis and asthma in children
between 6 and 7 years of age in some countries.
Figure 9.6.2. Annual changes in prevalence rates of eczema, rhinoconjunctivitis and asthma in
children between 6 and 7 years of age in some countries.
Figure 10.1. Notification rates of some communicable disease reported in 2008.
Figure 10.2.1 Tuberculosis mortality rates by age group in different regions of Europe.
Figure 10.2.2. Public wealth index and tuberculosis prevalence rates in 27 EU countries plus Norway
and Iceland, 2006.
Figure 10.3.1. Highest reported HIV prevalence at national or regional level among pregnant women
or women giving birth in Europe, 2002-2004.
Figure 11.1. Number of child-protection registrations in United Kingdom according to primary type
of maltreatment and overall rate of registration per 10 000 child population younger
than 18 years, 2007-8.
Figure 11.2. Age-standardised rates of child death (0-14 years) due to homicide or manslaughter
per 100,000 population in the WHO European Region.
Figure 12.1. SDR from injury per 100,000 children 0-14 years of age, by country.
Figure 12.2. Number and distribution of injury deaths by age group and country.
Figure 12.3. Trend of SDR from injury by country in the age group 0-14 years from 1990 to 2009.
Figure 12.4. Number and distribution of hospital admissions due to injury by age group and
country.
Figure 12.5. Estimated DALYs/100,000 children 0-14 years of age by country in 2004.
Figure 12.6. External causes of fatal injuries in Europe among children 0-14 years of age.
Figure 12.7. Relative frequency of selected sport injuries in boys and girls 0-14 years of age.
Figure 12.8. Incidence rate of occupational injuries causing more than three days lost,
standardised by economic activity in the EU15 countries, Norway and Switzerland in
people less than 18 years of age.
Figure 12.9. Child Safety Action Plan process: country progress as of September 200.7
Figure 12.10. Overall child safety grades in Europe.
Figure 13.1. Percentage of population living in cities with various PM10 levels, 2007.
Figure 13.2. Blood lead levels in Swedish children, 1978−2005.
Figure 13.3 Dioxin levels in human milk in selected countries, 1988-2007.
Figure 13.4. The state of the art of CEHAPE development in the European Region in 2009.

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Abbreviations
Institutional designations and abbreviations for countries:
Country Code Country Code
Austria AT Lithuania LT
Belgium BE Luxembourg LU
Bulgaria BG Malta MT
Cyprus CY Netherlands NL
Czech Republic CZ Poland PL
Denmark DK Portugal PT
Estonia EE Romania RO
Finland FI Slovak Republic SK
France FR Slovenia SI
Germany DE Spain ES
Greece EL Sweden SE
Hungary HU United Kingdom UK
Ireland IE Croatia HR
Italy IT FYR of Macedonia MKD*
Latvia LV Turkey TR
Iceland IS Norway NO
Liechtenstein LI Switzerland CH
* not official
Other abbreviations:
ADHD Attention Deficit Hyperactivity Disorder
CRC Convention on the Rights of the Child
DALY Disability-Adjusted Life Years
DG SANCO Directorate General for Health and Consumers
EAHC Executive Agency for Health and Consumers
EC European Commission
ECDC European Centre for Disease prevention and Control
EFTA European Free Trade Association
EU European Union
EUROSTAT European Statistics
HBSC Health Behaviour in School Children
ICD International Classification of Diseases
IUGR Intra Uterine Growth Restriction
LBW Low Birth Weight
MICS Multiple Indicators Cluster Surveys
NGO Non-Governmental Organisation
OECD Organisation for Economic Co-operation and Development
SES Socio-economic status
UN United Nations
UNICEF United Nations Children’s Fund
WHO World Health Organization

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Authors and Contributors
Editors
Adriano Cattaneo, Laura Cogoy, Anna Macaluso, Giorgio Tamburlini
List of authors and contributors
Institute for Maternal and Child Health IRCCS Burlo Garofolo, Trieste, Italy
Alessandro Bavcar, Irene Bruno, Claudia Carletti, Adriano Cattaneo, Laura Cogoy,
Marzia Lazzerini, Anna Macaluso, Lorenzo Monasta, Marcella Montico, Paola Pani,
Luca Ronfani, Giorgio Tamburlini
Institute of Neurology Carlo Besta, Milan, Italy
Ana Alvarez, Milda Cerniauskaite, Matilde Leonardi, Paolo Meucci
Childhood Cancer Registry of Piedmont, Turin, Italy
Franco Merletti, Paola Pisani
International Clearinghouse for Birth Defects, Rome, Italy
Pierpaolo Mastroiacovo
Department of Hygiene and Epidemiology, University of Udine, Italy
Fabio Barbone, Laura Deroma, Francesca Valent
University of Rome Medical School, Rome, Italy
Roberto Averna, Francesca Freda, Roberta Penge
Mario Negri Institute for Pharmacological Research, Milan, Italy
Maurizio Bonati, Antonio Clavenna, Francesca Severino
School of Health and Social Studies, University of Warwick, United Kingdom
Nicholas Spencer
Language and style assistant
Carolina Orloff
Acknowledgements
Antoinette Martiat (EAHC), Elvira Goebel (DG-SANCO)
Paul Bloem (WHO, Geneva), Francesco Chiarelli (Chieti University), Domenico Grasso
(IRCCS Burlo Garofolo), Mark Muscat (EUVACNET), Stefano Pensiero (IRCCS Burlo
Garofolo), Marco Rabusin (IRCCS Burlo Garofolo), Alessandro Ventura (IRCCS Burlo
Garofolo)
Administrative support
Alessandra Knowles, Mariarosa Milinco

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Executive Summary
Health is a fundamental right for children, as stated by the Convention on the Rights of the
Child. Child health is also increasingly valued as a key precursor of health in the life course.
The EAHC and DG SANCO of the EC have commissioned this report to provide policy-
makers and public health experts with a comprehensive, albeit synthetic, overview of child
health and its main determinants. The report puts together, analyses and discusses available
data and information on the health of children up to 12 years of age in the 27 Member States
of the EU, the 4 EFTA States, and the 3 official candidate countries (Croatia, FYR of
Macedonia and Turkey).
The report starts with an overview of data on births, deaths, health and well-being (Chapter
1). The infant mortality rate shows a constant and remarkable decrease, from almost 28 per
1,000 live birth in 1965 to 4.3 per 1,000 in 2009. During this time, most infant deaths shifted
from the post-neonatal to the neonatal period in EU15 and EFTA countries, while post-
neonatal mortality still represents a significant proportion of infant deaths in EU12 and official
candidate countries. Perinatal and congenital causes, affecting mostly neonates, account for
the largest proportion of infant deaths in all countries. In the age group 1 to 14 years, cancer
is the first cause of death in EU27 countries, followed by external causes, mainly road
accidents. The improved survival of very LBW infants and of children affected by severe
diseases and congenital anomalies tends to increase the proportion of children living with
functional impairments. In general, many chronic diseases show an increasing trend, while
communicable diseases and injuries have a tendency to decrease. In spite of recent
progress in the development and implementation of EU-wide surveys, there is still a lack of
comparable data on child growth, cognitive and socio-emotional development, and well-
being. There is also a serious gap in the capacity to capture inequalities across population
groups; this gap seems to be deepening due to an increase in social divide and migration,
and to a reduction in welfare programmes.
The main determinants of child health are described in Chapter 2. These determinants
include not only the social, psychosocial and physical environments in which children are
conceived, born and raised, but also the social and health system policies that can modify
these environments and thus have an impact on the underlying determinants, and
consequently on child health. Socio-economic status has a bearing on parental education,
maternal health, environmental exposure, infant and child nutrition, access to care, and it
ultimately contributes to health outcomes. Macroeconomic and fiscal policies, as well as
public policies in various sectors (health, education, environment, gender, legal status of
minorities and migrants), play a role at different levels of the causal pathways of health and
disease, and contribute to increase or decrease health inequalities and inequities. Changing
economic and social environments, as a consequence of economic downturns, have a direct
and indirect impact on child health and well-being. Exposures and practices related to social
determinants, from conception to the early years of life, are crucial for child health and
development, and altogether have deep implications for population health in general.
Since many of the current trends in the health of children and adults have their explanations
in changes in exposures and practices occurring from conception to birth, Chapter 3
describes the most significant conditions affecting mothers, even if they are not included in
the scope of this report, and newborns. In comparison to other regions of the world, in
Europe, the most prominent indicators of perinatal health (mortality, LBW) portray a
favourable situation. There are, however, important inequalities among and within countries.
To ensure a good start in life, and to lay the foundation for optimal child health and
development, adequate maternal nutrition, exposure to tobacco smoke, alcohol and other
substances, as well as universal access to appropriate quality health care in the
periconceptional period, during pregnancy and at childbirth, need to be effectively addressed.
Along with perinatal conditions, congenital malformations account for an important proportion
of child deaths and long-term disabilities (Chapter 4). Prevalence of congenital

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malformations at birth is estimated at around 2% of all live births. The most reasonable
estimate of the number of newborns with a congenital malformation in the EU27 countries is
approximately 160,000 per year. Temporal trends vary in relation to changes in exposure to
risk factors and active preventive interventions. Increasing trends are reported for
gastroschisis and Down syndrome, decreasing trends for anencephaly and spina bifida. It is
difficult, however, to provide reliable time trends as diagnostic accuracy improved
substantially in the last years for some conditions and may be responsible for the apparent
increase. Causes and risk factors include genetic anomalies, unhealthy life styles and
nutrition, some chronic maternal diseases, prenatal exposures to teratogenic drugs and
environmental pollutants, and maternal age. Preventive interventions include the effective
control of known causes and risk factors, preconception counselling, and early recognition
followed by effective treatment.
Chapter 5 shows that a substantial proportion of children suffer from one or more
neurological and developmental disorders. Cerebral palsy is the most common child disability
in Western Europe, with a prevalence of about 2 cases per 1,000 live births. Reviews show
discordant data about temporal trends. The overall prevalence of some neurological and
developmental conditions may be increasing due to increased survival of very LBW infants
and children affected by rare diseases that affect also the central or peripheral nervous
system. The International Classification of Functioning, Disability and Health represents a
milestone in modern thinking about assessment and treatment for children with disability, but
its implementation is still partial and not homogeneous. This hampers adequate recognition
and care, as well as cross-country comparisons. There are still striking differences across
countries and important gaps in the capacity to provide optimal comprehensive and
multidisciplinary care to children affected by neurological and developmental disorders. For
example, there are countries in which children affected by severe neurological conditions are
institutionalised, when in fact children with neurological impairment should be rather provided
with inclusive education and specific support.
Mental health (Chapter 6) is strictly linked with the disorders discussed in the previous
chapter. Up to 20% of children may have mental or behavioural problems that may range
from minor complaints to severe disorders, with large variations in prevalence estimates
across countries. It is usually thought that mental health problems are on the rise; yet no
consensus has been reached on whether this is true. For example, the great increase in
autism spectrum disorders is mainly due to the adoption of broader definitions. Several
biological, psychological and social risk factors are associated with mental health and the
development of mental disorders from early childhood to adolescence. There is increasing
awareness of the importance of improving preventive action and access to mental health
services for children. Over the past few years several countries have made progress on this.
However, many children with mental health problems are not receiving the care they need
and community-based prevention programmes are lacking.
Cancer in children (Chapter 7) is a rare event, far less frequent than in adults, representing
less than 1% of all cancer cases. The incidence rate in the EU27 countries is on average 131
new cases per million children per year. Cancer is the first cause of death in children
between 1 and 14 years of age. The most common type of cancer in children is leukaemia
(30%), followed by tumours of the central nervous system (about 20%) and by lymphomas
(14%). Up until the present decade, the incidence of childhood cancer has been increasing.
Improved diagnostic procedures and recording accuracy may account for part of this
increase. The extent to which changes in life styles and exposure to environmental
carcinogens could account for the increasing trends remains undetermined. Despite intense
research, there is poor understanding of the causes and mechanisms underlying the disease
onset, leaving little room for primary prevention. In the last four decades, treatment has
become more and more effective, so that over 70% of children who get cancer nowadays
can be cured. However, late adverse effects of therapy are common in survivors. Guidelines
for long-term clinical monitoring and mechanisms to deliver targeted care need to be
developed.

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Rare diseases (Chapter 8), include an extremely diverse group of inherited and acquired
conditions. They differ in terms of severity and clinical expression, but many are complex,
degenerative and chronically incapacitating. A disease is defined as rare when it affects no
more than 5 people in 10,000. There are about 7,000 chronic, and often incapacitating, rare
diseases; about 50% of them affect children. When taken together, rare diseases are a major
cause of mortality, morbidity, disability and dependency, but each rare disease, taken
individually, affects a small minority of people, so that the first obstacle is to give them
adequate recognition and visibility. Patients with rare diseases need special centres for
diagnosis, treatment, follow-up, and psychosocial support. In addition to recognition, the
main challenges posed by rare diseases in Europe are the development of comprehensive
care strategies and the support to research for new drugs and diagnostics. National centres
of excellence for at least some rare diseases exist in 12 Member States. As it is impossible
to have a centre of excellence for every rare disease in every country, enhanced
cooperation, coordination and common regulations across countries is highly necessary.
A group of different conditions of public health importance is discussed in Chapter 9. Oral
health (Chapter 9.1) is essential for health and quality of life. The most widely available
indicator of oral health in children is the number of decayed, missing or filled permanent teeth
(DMFT) in 12-year-olds. The past 25 years have seen substantial falls in the DMFT index
across EU countries, but the improvements have been less marked in Central and Eastern
Europe countries and in deprived socio-economic groups. Improvement may be better
achieved by broadening the scope of oral health programmes to include improvements in
quality of life, reduction of health inequalities, and access to good quality care, as already
done in some Member States. Improvements may also be obtained by integrating oral health
activities into maternal and child health programmes and in programmes for the prevention
and control of non-communicable diseases.
Obesity (Chapter 9.2) is currently considered a worldwide epidemic and a problem of very
high public health importance, since it is associated with a number of subsequent
complications and is considered to be a risk for many other diseases and conditions. The
prevalence of obesity in children shows a great variability among countries, being already
worryingly high in some. The trend is probably moving upwards in school children, but not in
infants and pre-school children. A complex web of interrelated individual, family, social,
economic and environmental determinants is associated with the rise in the prevalence of
obesity through changes in diet and physical activity. To modify these determinants and
control obesity, multi-sectoral approaches that tackle inequalities are needed at local and
national levels. Obesity starts early in life and its determinants act mainly before conception,
during pregnancy and in early infancy. Strategies for prevention should concentrate on these
early life stages.
Chapter 9.3 deals with diabetes. Type 1 diabetes remains the main form of diabetes in
children. The incidence rates range from about 3 to about 60 per 100,000 children 0-14 years
of age, with a north-to-south gradient. The incidence rate is increasing alarmingly in all
countries, with greater increases in children under 5 and in Central and Eastern European
countries, probably associated with environmental factors acting very early in life. Though
data on children are scarce, type 2 diabetes occurs mostly during the second decade of life,
mainly as a consequence of poor dietary habits and increasing rates of obesity in the first
years of life. Primary and secondary prevention should focus on adequate nutrition and
physical activity early in life, and on access to improved case management and qualified care
in multidisciplinary centres. Participation in EU-wide registries and projects, with targeted
indicators, is deemed essential for monitoring and a better understanding of the
epidemiology of diabetes.
Congenital heart diseases are the most frequent causes of cardiovascular disease among
children in Europe (Chapter 9.4). Rheumatic carditis is still common in some Eastern
European countries. Venous and arterial thromboembolism, familial hypercholesterolemia
and stroke, albeit rare, are increasingly recognised as a paediatric concern. Child poverty,

12
inadequate dietary habits, smoking, obesity and a lack of physical activity are important risk
factors regarding cardiovascular diseases later in adulthood. Prevention, as well as control of
risk factors, should start early, before conception, and should continue during pregnancy,
and throughout infancy and childhood.
In the last two decades, increased awareness and new diagnostic tests have revealed that
coeliac disease is a common condition, with a prevalence of about 1% in the total population
in Europe (Chapter 9.5). For this reason, and for the wide range of signs, symptoms and
associated risk of auto-immune disorders, coeliac disease is an important burden for health
systems and societies. Knowledge and awareness on coeliac disease has increased
significantly in the last 20 years. However, underdiagnosis is still common. Prevalence rates
may be affected by bias related to case definition and diagnosis. An important challenge is to
improve active case findings among patients who seek medical advice, as well as evidence-
based guidelines for diagnosis and treatment. The disease fulfils many criteria for a
population screening, but additional research is needed to further explore the benefits and
risks of such a strategy.
Asthma and allergic conditions such as eczema, rhinoconjunctivitis and food allergy, are very
widespread in children, and place a high burden on patients, families and the health care
system (Chapter 9.6). Countries in Northern Europe report the highest prevalence of asthma
and allergic conditions, although over the last decade rising trends have been observed in
several countries in Eastern and Southern Europe. Causes and risk factors are complex and
include genetically-inherited susceptibility and environmental exposures. Strategies to reduce
the burden of asthma and allergic conditions should aim at improving prevention at
household and community level, as well as facilitating access to good quality case
management (including essential drugs), and promote patient and family education.
The prevalence of childhood blindness (Chapter 9.7) in Europe is between 0.1 and 0.41 per
1,000 children between 0 and 15 years of age, with significant variations across countries,
mainly due to the variable quality of data. Prevalence of low vision is unknown, but it can be
estimated as several times higher. Visual impairment may be caused by a variety of causes,
including retinopathy of prematurity, which is the leading cause in high-income countries,
congenital anomalies, cancer, myopia, amblyopia and injury. Prevention, early detection,
treatment and rehabilitation may substantially reduce the prevalence and the severity of
visual impairment problems. Technological developments may also considerably improve the
prospects of children with severe visual impairment, and should be made available to all
children.
National surveys report that between 1 and 2 in 1,000 children suffer from severe, usually
congenital, hearing loss, while many more suffer from mild to moderate, usually acquired,
hearing loss (Chapter 9.8). Hearing loss, when severe and present at birth or acquired in the
early years of life, leads to serious problems in speech and language development if not
recognised and treated. Identification of hearing loss through neonatal screening, now
implemented in most European countries, and hearing screening of older infants and
children, can prevent or reduce most of the consequences of severe and profound hearing
loss. Current rehabilitation options focus on hearing aids and cochlear implants, and on an
informed choice about communication options. Advances in human genetics and technology
have improved our ability to identify carriers of inherited hearing loss and to provide genetic
counselling.
Though communicable diseases are very common in children and are responsible for a large
proportion of the overall burden of child health care, only communicable diseases of greater
public health importance have been addressed in this report (Chapter 10.1). Overall, the
incidence of most communicable diseases in Europe is decreasing. There are a few
exceptions (campylobacter, yersinia, hepatitis C), whereas for some diseases (e.g. influenza)
data are insufficient and no reliable trends can be obtained. Some vaccine-preventable
diseases (e.g. measles) are still endemic in some countries and population groups. The

13
coverage of immunisation programmes has been improving and is on average very high, but
disparities still exist among countries and population groups. New vaccines (e.g.
pneumococcal, rotavirus) have been recently introduced in some but not all countries, and
their effectiveness is still under scrutiny. Surveillance systems to monitor vaccine-
preventable diseases and immunisation coverage are in place and rapidly improving. The
surveillance of adverse events following immunisation is still meagre. Antimicrobial
resistance of some pathogens is increasing, possibly representing the single biggest
challenge that Europe must face with regard to infectious diseases.
Due to their global importance and specific control strategies, tuberculosis and HIV/AIDS are
discussed in two separate sub-chapters. Since 2003, nearly all countries, with some
exceptions, experienced a decline or stabilisation at low levels in paediatric notification rates
of tuberculosis (Chapter 10.2), suggesting a decreased or low level of transmission in the
general population. In countries with low incidence and low mortality rates, the disease is
increasingly aggregating in the foreign-born population, in vulnerable groups and in risk
settings associated with poverty and lowered immunity. Complementing current strategies
with efforts to address risk factors and social determinants is a crucial challenge.
HIV incidence in children is very low in Europe (Chapter 10.3), but trends in young adults are
increasing. Widespread implementation of measures to prevent mother-to-child transmission
has virtually eliminated this source of infection that remains relevant in specific vulnerable
populations such as migrant women coming from high-prevalence countries. Plans to identify
HIV-positive pregnant women and to start early treatment on mothers and their babies, if
infected, are based on routine HIV testing during pregnancy, but more integrated guidelines
on the performance of antenatal HIV screening are needed.
Child maltreatment (Chapter 11) remains a major public health and social welfare problem in
Europe. Population-based surveys show that a significant proportion of children are subject
to physical and/or emotional ill-treatment, sexual abuse, neglect or exploitation. In most
instances, child maltreatment is a chronic condition. Over 80% of maltreatment occurs within
the close family, while sexual abuse can also perpetrated by other relatives and/or
acquaintances. Child maltreatment has long lasting effects on mental health. It also
increases the risk of drug and alcohol problems, of risky sexual behaviour, of obesity and
criminal behaviour. In addition, it carries a high risk of intergenerational transmission. Only a
small percentage of maltreated children come to the attention of child-protection agencies,
indicating failure in recognising and reporting maltreatment. Although infrequent, child
abandonment, exploitation and trafficking represent forms of maltreatment that pose serious
threats to the survival, health and well-being of children. The serious and long-lasting
consequences of child maltreatment, abandonment and trafficking warrant increased
investments as well as intersectoral and international collaboration. Challenges include the
development and implementation of primary prevention for families who are at risk, improved
capacity for early recognition across child education, social and health services, and
appropriate institutional response once maltreatment has been detected.
Fatal and non-fatal accidents and injuries are extremely relevant to child health and
represent one of the leading causes of death among children 1 to 14 years of age (Chapter
12). Although a mortality reduction has been observed every year in the last two decades,
injuries still cause 4,000 deaths and more than 10% of all the DALYs lost among children 0
and 14 years of age. The most frequent external causes of fatal injury are transport accidents
(36%) and drowning and submersion (14%). Among body regions, the head is frequently
involved, accounting for a third of all injuries requiring admission to hospital. Child safety
level has been judged to be fair to good in the countries involved in the 2009 Child Safety
Action Plans, but improvement is still needed through the adoption, implementation and
enforcement of effective approaches to injury prevention. Childhood deaths from injury follow
a social gradient; inequalities among and within countries are deemed to reflect differences
in the environment that determine disparities in exposure to risk factors and in enforcement
practices.

14
Children, in particular from conception to the earliest years of life, are uniquely vulnerable to
environmental hazards. A substantial proportion of child mortality, morbidity and disability is
attributable to environmental exposures (Chapter 13). Exposure to outdoor and indoor air
pollution is a major cause of mortality and morbidity in European children. Chemical and
physical agents such as heavy metals, dioxins, PCBs, pesticides, noise pollution, ionizing
and ultraviolet radiations cause substantial hazards to children in all countries. In rural areas
and marginalised population groups, unsafe water and inadequate sanitation are also an
important cause of disease. There is increasing concern about the risks deriving from
multiple low-level exposures to chemicals during embryo-foetal development. Thanks to the
EU REACH legislation and to the development of EU-wide environmental health indicator
and monitoring systems, and of children’s environment and health action plans, there has
been some progress in risk reduction, notably in the area of lead, PCBs and dioxins, indoor
and outdoor air and water pollution. Challenges include the further development of child-
focused monitoring and biomonitoring systems, as well as the setting up of intersectoral
collaboration to implement child-focused risk reduction policies that take into account the
marked inequities in children’s exposure and vulnerability to environmental hazards across
countries, age groups and socio-economic levels.
The effort to provide a comprehensive though synthetic overview of child health allowed to
identify some key issues that appear to be common to all the countries included in this
report, even when the substantial differences existing across countries are taken into
account. These issues are:
1. The increasing burden of chronic, non-communicable diseases and conditions.
2. The gaps in knowledge and understanding of the causes of many chronic conditions.
3. The importance of exposures to risk factors during the earliest life stages.
4. The persistence, and in some cases the increase of important inequalities.
5. The role of social determinants in shaping susceptibility and exposure to risk factors.
6. The obstacles to access to quality health services and comprehensive care for some
diseases and conditions.
7. The scarcity of promotion and prevention programmes specifically devoted to children.
8. The inability to adequately describe and compare child health and well-being across
Europe in a standard and valid way.
It must be recognised that in no other part of the world children enjoy better health and life
conditions than in Europe. It should also be acknowledged that thanks to the initiative and
leadership of the EC, of governments, of WHO, and of other international and national
authorities and partners, an impressive amount of commitments have been made over the
last decade to protect, promote and improve child health. Nevertheless, this report suggests
that to maintain, and possibly improve, this thus far unprecedented state of child health and,
most importantly, to give all children equal opportunities, there are a number of challenges
ahead that need to be addressed.

15
Introduction
This report responds to a call from the Directorate General (DG SANCO) and the Executive
Agency for Health and Consumers (EAHC) of the European Commission to bring together
available data and information on child health. The aim is to present a comprehensive
overview on the health status, healthcare, diseases, social conditions and their background
for children up to 12 years of age in the EU and EFTA Member States, as well as official
candidate countries.
Data and information are not limited to disease. The report takes into consideration political,
social, economic, cultural and environmental factors that have a bearing on child health, the
so-called determinants of health. In accordance with mainstream thinking, social policies and
health systems are included among the social determinants of health. As a consequence, the
report does not deal only with health and health care; it expands on health protection and
prevention beyond the health system, taking into account the most important factors that
affect child health and well-being. Finally, although focused mainly on health status, the
report makes an attempt to identify knowledge gaps and challenges to be addressed.
Given the size of this report, not all aspects of child health have been understandably
covered. As instructed by DG SANCO and EAHC, the scope of the report has been limited to
health conditions that are considered of public health importance, either because of their high
prevalence (e.g. common infections, asthma, allergies, obesity, dental caries), their severity
(e.g. type 1 diabetes, cardiovascular diseases, sensory deficits), or their emerging
importance and broad health implications (e.g. coeliac disease, autism spectrum disorders).
Once the task of writing the report was assigned, the authors and representatives of DG
SANCO and EAHC defined the list of topics and the contents of the report. This reflects only
a part of the large amount of data and information available. References are provided for
those readers who wish or need to look into the different topics in further detail. Also, some
of the topics cut across several conditions, nutrition being a typical example. Instead of
devoting a full chapter to this, the authors have chosen to deal with nutrition as a determinant
of health and disease. It is acknowledged that this choice may be an obstacle to a more
complete understanding of the current state of nutrition of children in Europe, yet readers will
be able to elaborate on this by going through the wealth of documents and reports available.
Depending on availability of data, the report covers all 27 EU Member States, the four EFTA
countries, and the three official candidate countries. Official EU designations and
abbreviations are used for all countries, except for the FYR of Macedonia, for which the
provisional MKD abbreviation has been used. Whenever possible, data are presented by
country. In some cases, however, it was decided to group countries with similar features as
follows: EU15 (Austria, Belgium, Denmark, Finland, France, Germany, Greece, Ireland, Italy,
Luxembourg, Netherlands, Portugal, Spain, Sweden, United Kingdom), EU12 (Bulgaria,
Czech Republic, Cyprus, Estonia, Latvia, Lithuania, Hungary, Malta, Poland, Romania,
Slovenia, Slovak Republic), EU27 (EU15+EU12), EU candidate countries (Croatia, FYR of
Macedonia, Turkey), and EFTA countries (Iceland, Liechtenstein, Norway, Switzerland).
As much as possible, the report presents the findings through an equity lens. Inequalities and
inequities have been found across and within countries, irrespective of the equity stratifier
used, e.g. social class, income, gender, parental education or occupation, area of residence.
Unfortunately, data on inequalities are not available on all conditions and from all countries,
and when available they are seldom gathered with standard definitions and methods. This is
true, needless to say, for most data on health, well-being and disease, so that caution should
be observed when making comparisons and drawing conclusions. Readers should be aware
of some challenges regarding interpretation of results deriving from incompleteness of data,
lack of standard definitions and methods, and common misconceptions when analysing the
results (see box overleaf).

16
The report is primarily addressed to policy and decision makers, as well as to other experts
in the area of child health at national and subnational levels. However, whenever possible,
the authors of this report have tried to use non-specialised language, so that the report is
accessible to a wider, lay readership.
The term ‘child’ is used in a neutral way and does not imply a gender preference. The call for
tender defined the 0-12 age group as the focus for this report. The authors have tried to meet
this requirement as much as possible. Most demographers, statisticians, epidemiologists and
researchers, however, do not use the 12-year cut off and prefer the classical 5-year intervals,
and for most published data, it is impossible to obtain a different breakdown.
Caveats and Common Misconceptions when Interpreting Results
• Incompleteness. When data are incomplete, they may represent only part of the
reality. As missing data may refer to individuals or events with characteristics that
differ from those originating in the available data, incompleteness may introduce an
inevitable bias. The higher the degree of incompleteness, the higher the chances of
bias. Comparing data with different degrees of completeness may be very difficult and
should be done with great caution.
• Definitions and methods, lack of standards, accuracy. The way data reflect reality
depends on the instrument used to gather them and also, when the instrument is a
questionnaire, on the definition used to identify an event, a disease or a health
condition. Regrettably, there are few health conditions whose standard definitions and
methods (including thresholds) are agreed upon by everybody in a country or by
different countries in Europe. Even when standard definitions and methods are used,
they may not yield results with the same accuracy. Much depends on how these
standards are applied (e.g. type of measurement, instruments and their calibration,
type of interviewer and training). Different definitions, methods, thresholds and levels
of accuracy, add to the difficulties often encountered in comparing data from different
sources.
• Absolute vs. relative risk. The absolute risk for a given disease is expressed by the
incidence and mortality rates associated with that disease. The relative risk refers to
the incidence and mortality in a given population group relative to another population
group. The relative risk may be very high, indicating that the risk factor is strongly
associated with the disease, but reducing or even eliminating the exposure to the risk
factor may have very little effect on the health of a given population, if that disease is
rare. On the contrary, the relative risk may be low, but if disease and exposure to the
risk factor are very common, even small reductions in exposure may be very
significant. Policy and decision makers prefer to look at reductions of the absolute risk,
because this is a more straightforward way of looking at the effect of strategies and
interventions.
• Cause vs. association. The fact that a factor is associated with a disease or health
condition does not mean that there is a cause and effect relationship between that
factor and the disease or health condition. For most diseases and conditions in
industrialised countries there is a myriad of factors associated with any given disease
or condition, and unless action is directed at all or most of them, the health situation
may not improve. In addition, one factor may be associated with several diseases or
conditions, and thus action on it may have effects beyond the target disease or
condition.
• Lack of evidence vs. negative evidence. Lack of evidence (e.g. that an intervention
has an effect on a disease or condition) means that researchers have not been able
yet to demonstrate a given effect, though the effect may exist. A negative evidence,
instead, usually indicates that there is evidence on the lack of effectiveness of a
certain intervention, and therefore, evidence that the intervention should not be
recommended.

17
The data used to write this report are all published or otherwise available in the public
domain from official sources, such as the EU, WHO, UNICEF and other UN agencies, the
World Bank, the OECD, as well as from government reports. Data are also available from
reports of EU-funded research and public health projects, some of them ongoing, on specific
diseases or groups of conditions. Finally, data were drawn, when needed, from research
articles and systematic reviews published in medical journals and retrievable through
services such as Medline, Embase, Web of science, Cinhal, PsychInfo and Popline. Only the
sources used for general purposes are cited below (see box). Those used to deal specifically
with a single disease or condition, are referred to within the individual chapters.
EUROSTAT is the source of reference for most data on mortality and morbidity. The data
found in this large database are provided by national statistics offices. With regard to
children, data are broken down into 5-year age groups: 0-4, 5-9 and 10-14, as recommended
by the EU-funded CHILD (Child Indicators for Life and Development) project, which was
used also as a reference for child health indicators. More indicators are available from
another EU-funded project, the ECHI (European Community Health Indicators) project. The
Health for All database and the mortality database, country profiles, reports and atlases
made available by the Regional Office for Europe of WHO, were used to complement
information on mortality and morbidity, as needed, as well as for information on hospital
admissions. Other data were available, especially as far as EU12 and candidate countries
are concerned, from UNICEF sources, the ChildInfo database and the reports of Multiple
Indicators Cluster Surveys. For the same EU12 and candidate countries, data were collected
also from Demographic and Health Surveys, often carried out at regular time intervals. The
OECD uses the data provided by countries and other agencies to develop reports that deal
not only with health and disease, but also with their political, social and economic
determinants. Finally, more data on different aspects of child health have been posted on the
websites of other EU-funded projects, such as EUGLOREH (EU Global Report on Health)
and EUPHIX (EU Public Health Information and Knowledge System).
With such a wide variety of sources, it is inevitable to find data on the same health indicator
gathered in different ways. With some exceptions, researchers and statisticians in Europe,
and elsewhere, use non-standard definitions and methods of data collection. As much as
possible, the authors of this report have tried to use data gathered using consistent
definitions and methods. Readers will be informed when this has not been the case.
Difficulties with the interpretation of results, in particular when comparing countries or
population groups and analyzing trends, may arise from problems that are intrinsic to the
data used (see box on page 16). Readers should be cautious in drawing conclusions from
Main Sources of Information:
• CHILD
http://ec.europa.eu/health/ph_projects/2000/monitoring/fp_monitoring_2000_frep_08_
en.pdf
• DHS http://www.measuredhs.com/
• ECHI http://ec.europa.eu/health/ph_information/dissemination/echi/echi_en.htm
• European Detailed Mortality Database http://data.euro.who.int/dmdb/
• EUGLOREH http://euglorehcd.eulogos.it/IXT/_EXT-REP/_INDEX.HTM
• European Detailed Mortality Database http://data.euro.who.int/dmdb/
• EUPHIX http://www.euphix.org/object_document/o4581n27010.html
• EUROSTAT http://epp.eurostat.ec.europa.eu/portal/page/portal/eurostat/home/
• OECD http://www.oecd.org/statsportal/0,3352,en_2825_293564_1_1_1_1_1,00.html
• UNICEF ChildInfo http://www.childinfo.org/
• UNICEF MICS http://www.unicef.org/statistics/index_24302.html
• WHO/EURO Health for All
http://www.euro.who.int/InformationSources/Data/20010827_1
• WHO/EURO Country Profiles
http://www.euro.who.int/InformationSources/Evidence/20010827_1

18
comparisons. Some key terms and indicators used in the report are explained in the
glossary.
The report starts with a brief overview on demography, mortality, morbidity, health and well-
being, followed by a chapter on determinants of child health. The main body of the report is
formed by chapters devoted to the selected groups of diseases and conditions. With the
exception of those not dealing with diseases, these chapters are organised as far as possible
in the same way to facilitate reading:
1. Key messages are listed at the beginning of each chapter, followed by a very short
introduction, whose aim is to provide synthetic definitions and inform the reader of the
choices made by the authors.
2. Each chapter then moves on to quote the main sources of information except for those
generic sources that have already been cited in this general introduction. If other
references are cited in addition to the main sources, this is done with superscript
progressive numbers as in scientific articles, and the list of references is given at the
end of the chapter. General comments about completeness, representativeness and
accuracy of the data have already been made in this introduction. If and when needed,
specific comments are made for particular diseases or conditions in respective
chapters.
3. The size of the problem is subsequently presented in terms of incidence, prevalence,
mortality, disability or any other measure deemed appropriate for that specific disease
or condition, or for those groups of diseases and conditions. Whenever possible,
information on socio-economic disparities and on the burden to individuals, families,
society and health systems, as well as consequences for adult life, are reported. The
chapters also present, when available, trends from over the past 10 years (or more, if
available and appropriate). An indication on whether the problem will be likely to
increase or decrease is also shown.
4. The size of the problem is followed by information on causes and risk factors, including
social and other determinants, and relative exposure. Suggestions are provided on
whether all these causes, factors and determinants are, or will, be under control.
5. This is followed by a section on challenges, i.e. on which are the problems that should
be tackled to move forwards in terms of effectiveness and equity for better health
outcomes. Knowledge gaps and research needs are also briefly listed as necessary.
6. When deemed necessary, boxes are used to draw attention to the lessons learned on
specific child health problems, to highlight specific issues and initiatives, or to present
in more detail interesting examples of interventions and strategies.

19
Glossary
Life expectancy at birth. The average number of years that a newborn can expect to live if
mortality patterns remain unchanged. Values are highly affected by mortality early in life.
Validity depends on how complete the registration of births and deaths is. Life expectancy
calculated using incomplete mortality data tends to be higher than real.
Life expectancy at different ages. The average number of years that a person at a given
age can expect to live if mortality patterns remain unchanged.
Healthy life years. Number of remaining years that a person of a certain age is supposed to
live in good health or free of disability. Calculated combining data on mortality and on the
self-perceived disability as assessed by health surveys. Not suitable to estimate the impact
that a disease or condition (e.g. injuries) has on a population, yet a good indicator to describe
the health status of a population, monitor its trends, and compare it with other populations.
Not a terribly useful measure for child health, since most years lived in less than full health
tends to occur later in life.
Disability-adjusted life years. Number of years of healthy life that are lost due to premature
mortality, ill health or disability as assessed by health surveys. A measure of overall disease
burden in a population. Suitable to estimate the cumulative impact that a certain disease or
condition has in a population.
a
Perinatal mortality rate. Weight-specific (1000 g +) foetal deaths and early (0-6 days)
neonatal deaths per 1,000 births (live births + stillbirths). If weight-specific data are not
available, any available data provided according to national criteria can be used as proxy.
Infant mortality rate. A measure of the yearly rate of deaths in infants less than one year old
per 1,000 live births in the same year. Usually broken down into: early neonatal (0-6 days),
late neonatal (7-27 days), neonatal (first 4 weeks of life), and post-neonatal (from the 5
th
to
the 52
nd
week of life). Some countries are unable to ensure complete registration of all births
and deaths, and tend to underestimate these rates.
Child mortality rate. A measure of the yearly rate of deaths in children less than five years
old per 1,000 live births in the same year. It adds the mortality rate between 1 and 4 years to
infant mortality rate. In EU countries the 1 to 4 years mortality rate is insignificant compared
to infant mortality. For these reasons, this report groups together this rate and the rate of
mortality between 5 and 9 years of age, and between 10 and 14 years if age (data
disaggregated to 12 years are not available).
ICD-10. The international standard diagnostic classification of diseases endorsed by the 43
rd
World Health Assembly of May 1990 and used by WHO Member States since 1994. The
classification is the latest in a series that has its origins in the 1850s. It is used to classify
diseases and other health problems registered on many types of health and vital records,
including death certificates and health records. In addition to enabling the storage and
retrieval of diagnostic information for clinical, epidemiological and quality purposes, these
records also provide the basis for the compilation of national mortality and morbidity statistics
by WHO Member States.
DSM IV. The Diagnostic and Statistical Manual of Mental Disorders is published by the
American Psychiatric Association. It includes all currently recognised mental health
disorders. The coding system of the DSM-IV is designed to correspond with codes from the
International Classification of Diseases, commonly referred to as the ICD.
a
Since there is no uniform definition of disability, different estimates of healthy or disability-adjusted
life years can be calculated depending on the particular definitions used in different health surveys.

20
Incidence. The absolute number of new cases of a disease or condition during a given
period. When used with a denominator, e.g. 1,000 live births or 100,000 children of a given
age, it becomes an incidence rate. This is a measure of the risk of developing some new
disease or condition in a given population within a specified period of time. The cumulative
incidence is the number of new cases within a specified time period, divided by the size of
the population initially at risk. When the denominator is the sum of the person-time of the
population at risk, it is also known as the incidence density rate or person-time incidence
rate.
Prevalence. The absolute number of cases of a disease or condition in a given population at
a given time. When used with a denominator, e.g. the total number of births or 100,000
children of a given age, it becomes a prevalence rate. Used to estimate how common a
disease or condition is within a population at a certain of time. It is not a measure of risk and
it is therefore inappropriate when studying causes. However, it helps physicians or other
health professionals understand the probability of certain diagnoses. It is commonly used by
epidemiologists, health care providers and government agencies to plan health services.
Birth weight is the first weight of the foetus or newborn obtained after birth. For live births,
birth weight should ideally be measured within the first hour of life before significant postnatal
weight loss occurs. Low birth weight is defined as a weight of less than 2500 g (up to and
including 2499 g), irrespective of gestational age. Newborn infants weighing less than 1500 g
are labelled as infants with very low birth weight; those weighing less than 1000 g are
defined as extremely low birth weight infants. Infants with birth weight over 4500 g are
defined as large or macrosomic.
Gestational age is given by the completed number of weeks from the beginning of the last
menstrual period to birth. Gestational age is considered as normal when birth occurs
between 37 and 41completed weeks. Infants born after 41 completed weeks are defined as
postmature. Infants born between 32 and 36 completed weeks are defined as mildly preterm.
Infants born between 28 and 31 completed weeks are defined as very preterm, those born
before 28 weeks are defined as extremely preterm. The combination of birth weight and
gestational age allows to categorize infants as small or large for gestational age.

21
1. Of Births, Deaths, Health and Well-being: An Overview
A comprehensive definition of health, encompassing social and psychological well-being, is
compelling when describing and analyzing child health, since what is unique to children is
that they grow and develop. A comprehensive view of child health should therefore include
optimal child growth and development, and should take into account all the factors that may
interfere with optimal cognitive and socio-emotional development. Unfortunately, current
health information systems are focusing mainly on mortality and acute morbidity. The
development dimension and the ability to perform functions, undoubtedly more complex to
describe and measure, are not systematically addressed. As a consequence, this chapter
falls short of a comprehensive description of child health, but nonetheless attempts to
provide at least a general idea about what should be observed and measured more
systematically and rigorously.
Demography
The total number of recorded live births in the EU27 countries was 5,141,876 in 1996 and
5,186,922 in 2006, passing through a lowest of 4,959,328 in 2002. The proportion of the child
population out of the total population in Europe tends to decrease, despite the relatively
stable, or slightly increasing, number of live births. The proportion of children under 15, which
was almost 18% in 1996 (17% in EU15, 20% in EU12 countries), went down to 16% in 2006
(similar in EU15 and EU12 countries), for a total population of about 80 million children under
15. This relative reduction is explained by increasing life expectancy and by relatively stable,
or slightly increasing, fertility rates, mainly due to higher fertility among migrant women,
combined with a reduction in the number of women in fertile age. Figure 1.1 shows that the
total fertility rate, i.e. the average number of children a woman would have in her lifetime if
she were to experience over it the current age-specific fertility rates, is lower than 2 in almost
all countries, when to have a stable population, slightly more than 2 is the level needed. With
a total fertility rate lower than 2, the population will inevitably decrease.
Key Messages
• The proportion of child population over the total population in Europe shows a
decreasing trend, despite the relatively stable number of live births.
• Over the last four decades, there has been a continuous and remarkable decrease
in infant mortality rates, from almost 28 per 1,000 in 1965 to 4.3 per 1,000 live births
in 2009.
• The greater burden of mortality and morbidity shifted from the post-neonatal to the
neonatal period and from communicable to chronic diseases and injuries, posing
new challenges for the identification of causes and risk factors, for the adoption of
preventive strategies and of comprehensive care.
• There are persistent and some times growing inequalities in child health outcomes,
due to the increasing social divide, to migration, and to reduction in welfare
programmes.
• In spite of recent progress, there are still important gaps in the ability to
comprehensively and adequately describe the health status of children, and to
capture inequalities and inequities within and across population groups.

22
Figure 1.1. Total fertility rate, 1996-2006 (or closest available years)
0.0 0.5 1.0 1.5 2.0 2.5 3.0
AT
BE
BG
CY
CZ
DK
EE
FI
FR 1996-2005
DE
EL
HU
IE
IT
LV
LT
LU
MT
NL
PL
PT
RO
SK
SI
ES 1997-2006
SE
UK 1996-2005
HR 1997-2006
MK
TR
IS
NO
CH
EU 27
EU 15
EU 12
average number of children per woman
1996 2006
Infant Mortality
Over the last four decades, infant mortality in EU27 countries fell dramatically, from almost
28 per 1,000 in 1965 to 4.3 per 1,000 live births in 2009. Figure 1.2 shows the decrease by
country between 1999 and 2009. The reduction in infant and child mortality over the 20
th
century is one of the main contributing factors for the high life expectancy recorded
nowadays in Europe. While most of this progress is attributable to improved nutrition,
education, housing and sanitation, the relative importance of health care is increasing. This is
particularly true for neonatal mortality, which currently represents over two thirds (68%) of
infant mortality in all EU15 and EFTA countries, while post-neonatal mortality still represents
a significant proportion of infant mortality in EU12 and candidate countries (Figure 1.3). In
general, the lower the infant mortality, the higher the proportion of neonatal mortality, and the
greater the importance of health care.

23
Figure 1.2. Infant mortality rates per 1,000 live births, 1999 – 2009
b
.
0 5 10 15 20 25 30 35
AT
BE
BG
CY
CZ
DK
EE
FI
FR
DE
EL
HU
IE
IT
LV
LT
LU
MT
NL
PL
PT
RO
SK
SI
ES
SE
UK
HR
MKD
TR
IS
NO
CH
EU 27
infant deaths per 1,000 live births
1999 2009
Figure 1.3. Neonatal and post-neonatal mortality rates per 1,000 live births, 2006 (or latest
available year).
0246810121416
AT
BE 1998-2004
BG
CY 1999-
CZ
DK
EE
FI
FR
DE
EL
HU
IE
IT
LV
LT
LU
MT
NL 2000-2006
PL
PT 1996-2002
RO
SK 1996-2005
SI
ES 1996-2005
SE
UK
HR
MKD
TR
IS
NO
CH
EU 27
EU 15
EU 12
neonatal and post-neonatal deaths per 1,000 live births
Neonatal Postneonatal
b
Some countries may not yet be able to ensure complete registration of all births and deaths. When
infant mortality is calculated using incomplete data, the rate is usually lower.

24
Since the decrease in fertility is associated with a decrease in infant and child mortality,
particularly at fertility levels above 2 per woman during the fertile ages, the decrease in
fertility over the past decades for EU15 and over the last decade in EU12 countries has also
played a role in the improved infant and child mortality indicators. Perinatal mortality has
followed the same downward pattern, the stillbirth component being usually equivalent or
slightly lower than the early neonatal component. The physiologically larger number of boys
born relative to girls (104:100) is offset to a small extent by higher mortality rates among
boys during their first year of life. In 2006, the infant mortality rate in the EU27 was 5.1 per
1,000 live births in male infants and 4.2 per 1,000 live births in female infants.
Causes of Infant Death
The causes of death are classified in all countries using ICD-9 or ICD-10 codes (see
glossary). For the purpose of this chapter, only a few ICD-10 code groups of interest have
been used to classify infant and child deaths: diseases and conditions originating in the
perinatal period (P00 to P96); congenital malformations (Q00 to Q99); diseases of the
respiratory system (J00 to J99); and injury and other consequences of external causes,
including transport (S00 to T98). All other causes of death have been grouped. Figure 1.4
shows that in 2006 perinatal and congenital causes accounted for the largest proportion of
infant deaths in all countries. Respiratory conditions, mainly pneumonia and other lower
respiratory tract infections, represent an important component of infant mortality only in
countries with higher infant mortality rates (Bulgaria, Romania, Slovak Republic, FYR of
Macedonia).
Figure 1.4. Infant mortality by cause, 2006 (or latest available year).
0246810121416
AT
BE 2004
BG
CY
CZ
DK
EE
FI
FR
DE
EL
HU
IE
IT
LV
LT
LU
MT
NL
PL
PT 2003
RO
SK 2005
SI
ES 2005
SE
UK
HR
MKD 2003
TR
IS
NO
CH
EU 27
EU 15
EU 12
infant deaths per 1,000 live births
Perinatal Malformations Respiratory External and Transport Other causes

25
Sudden Infant Death Syndrome (SIDS)
In the developed world, SIDS is the leading cause of death among infants between 1 month
and 1 year of age. Many countries have launched campaigns aimed at reducing incidence
based on known risk factors, mostly on sleep position (back to sleep) and on diverse housing
arrangements (temperature, mattress, bedding, parental smoking). These campaigns have
achieved substantial results and SIDS mortality has been decreasing over the past 20 years.
Figure 1.5 shows the trends in SIDS mortality per 100,000 live births in some countries
where SIDS campaigns started between 1987 (Netherlands) and 1992 (Sweden).
1
Similar
declines have been observed in other countries (for example, in Italy between 1990 and
2001)
2
and seem to continue after 2005, for example in England and Wales,
3
and in Ireland.
4
Figure 1.5. Decreasing SIDS mortality per 100,000 live births in some countries.
0
0.5
1
1.5
2
2.5
England/Wales Germany Ireland Netherlands Norway Scotland Sweden
1990 1995 2000 2001 2002 2003 2004
Child Mortality
As already mentioned, the risk of death decreases progressively over the first year, and
mortality rates are usually expressed per 100,000 live births after the first year. Figure 1.6
shows that in the group 1 to 14 years of age cancers are the first cause of death in EU27
countries, followed by external causes and road accidents (transport). However, cancers
come second in EU12 countries, preceded by external causes. Injury and accidents, added
up together, represent the overall first cause of death in this age group, with important
gender differences: boys die about 25% more than girls in the age group 1 to 14 years old,
mainly because of higher risk of deaths caused by injuries and accidents.

26
Figure 1.6. Mortality rates per 100,000 children 1 to 14 years of age, 2006 (or latest available
year).
0 5 10 15 20 25 30 35 40 45
AT
BE 2004
BG
CY
CZ
DK
EE
FI
FR
DE
EL
HU
IE
IT
LV
LT
LU
MT
NL
PL
PT 2003
RO
SK 2005
SI
ES 2005
SE
UK
HR
MKD 2003
TR
IS
NO
CH
EU 27
EU 15
EU 12
deaths per 100,000 children
Neoplasms External Transport Malformations Respiratory Other causes
Morbidity
When mortality rates are low, it becomes increasingly important to pay attention to morbidity
indicators, particularly for conditions with long-term impact on health and well-being such as
chronic diseases and disabilities. Unfortunately, definitions for these conditions and, most
importantly, recording systems, vary across countries. Consequently, the information is of
variable quality and often unsuitable for comparisons, although ad hoc studies conducted at
country level provide useful information to assess temporal trends.
There are, however, several exceptions. The European Surveillance of Congenital
Anomalies programme (EUROCAT) monitors congenital anomalies; the PERISTAT project
has assessed perinatal outcomes; the Automated Cancer Control Information System
(ACCIS) is providing accurate information about childhood cancers; multicentre studies such
as the International Studies of Asthma and Allergies in Childhood (ISAAC) have provided
useful information about prevalence across countries and hints about temporal trends of
asthma and allergies; and Europe-wide registers on several diseases have been established.
Understanding trends is extremely important to orient public policies. While readers are
referred to specific chapters for more in-depth analysis, an overview of temporal trends of the
main disease groups is provided in Table 1.1. Some patterns emerge. While the incidence of
injuries and of the main communicable diseases, and particularly of vaccine preventable
diseases, has been constantly decreasing, the incidence of childhood cancer has shown a
steady and rather uniform increase across countries over the last decades, at an average
rate of about 1.5% per year. Rising incidence, or prevalence, has also been shown for
perinatal conditions, such as prematurity and LBW, for asthma, type 1 diabetes and other
immune mediated diseases, although with a wide variation across countries. An increase has

27
also been detected for developmental disabilities and mental health disorders. The improved
survival of very premature babies have partially contributed to the increase of the former,
while for conditions such as autism spectrum disorders and other mental disorders the
increase is mainly due to extension of the diagnostic criteria and/or improved diagnosis.
Congenital malformations appear, overall, to be stable around an overall incidence of 2 per
100 births, but show variable patterns depending on the type of malformation. Overweight
and obesity have been on the rise for decades, although recently a plateau seems to have
been reached.
Table 1.1. Overview of Temporal Trends of Main Diseases and Disabilities in Children
Disease group
Incidence (I) or
Prevalence (P)
Temporal
trend
Comments
Perinatal conditions
(LBW, prematurity)
4-11%
(<2500 g) (I)

Real increase in most
countries
Communicable
diseases
Not applicable

Real decrease in all
countries
Congenital
malformations
2 per 100 births (I)

Decreasing or increasing
depending on type of
malformation
Overweight 33%

Real increase over the last
two decades
Neurological and
developmental
disorders
4-5% (P)

Increase partially due to
extended and improved
diagnostic criteria
Mental health 12-16% (P)

Increase partially due to
extended and improved
diagnostic criteria
Childhood cancer
14 per 100,000 (0-
14 years) (I)

Real increase in all
countries
Injuries Not applicable

Real decrease in all
countries
Comprehensive indicators of child health and functioning are not available. Disability
Adjusted Life Years (DALY) and Healthy Life Years (HLY) have been introduced to provide a
summary description of health status but country-specific estimates for children are not
available. Recently, a summary score of perceived health has been introduced by the
Kidscreen project. Information is available on a number of countries, showing that a
percentage of school-age children (8 to 11 years), ranging from 5.7% in Poland to 1.8% in
Spain, appear to be of ill-health.
5
Inequalities and Inequities
A cause of great concern is the persistence or increase in inequalities in health outcomes.
Comparative data on health inequalities in adults have been collected across Europe,
6
but no
Europe-wide data are available in children. This section, therefore, relies on national data
and ad hoc study findings from individual countries.
Social inequalities in infant and child mortality have been consistently reported from the
Netherlands, the United Kingdom and the Nordic countries.
7
Similar inequalities have been
reported in Belgium, Hungary, Italy and Turkey. A study from the United Kingdom reported
that, against a background of a general reduction in injury deaths among children 0-15 years
in the 1980s and 1990s, rates among children whose parents were long-term unemployed
did not decrease significantly. These children were over 20 times more likely to die as
pedestrians and cyclists, and over 30 times more likely to die in fires compared with the
children of very privileged families.
8
Poor children are much more likely to die from all types
of injury than their wealthier counterparts.
9
Social gradients in pregnancy outcomes have

28
been noted in many European countries up to the early 2000s and more recent data from
Finland, Germany, Italy, Netherlands, Spain, United Kingdom and the Nordic countries
confirm these gradients.
9
The social gradient in very preterm birth (22-32 weeks of
gestational age) reported in a study based in the Trent region of England is shown in Figure
1.7.
10
Figure 1.7. Very preterm birth by deprivation quintile (quintile 1 = least deprived; quintile 5 =
most deprived).
0
2
4
6
8
10
12
14
16
18
Quintile 1 Quintile 2 Quintile 3 Quintile 4 Quintile 5
rate/1000
Studies from Germany, Sweden and the United Kingdom report higher rates of asthma
among children from lower-income households. A population study from Sweden reported a
49% higher risk of cerebral palsy among children of low-income households compared to
their peers from high-income homes.
11
Using a broad definition of disability (longstanding
illness that limits the child’s normal daily activities), a study from the United Kingdom has
shown that these children are more likely to live in households with lower incomes than
children not experiencing any limitation due to illness.
12
Data on social patterning of mental
health problems are scarce in children younger than 12 years. However, survey data from
the United Kingdom demonstrate a marked social gradient by household income in all forms
of mental health problems in young children apart from conditions such as autism.
9
Low SES
of the family in 15 European countries (including 13 EU countries), as assessed with the
Family Affluence Scale, is associated with lower well-being of school children as measured
by the Kidscreen-10 index at age 11, 13 and 15.
Even though migration can be traced back to several generations, children from minority
groups (especially those from the Indian sub-continent in Northern European countries and
Roma children in the new Member States) have much higher incidence of a variety of
diseases. In the United Kingdom, the risk of admission to paediatric intensive care units (138
vs. 98 per 100,000) and mortality rates among those admitted (7.1% vs. 4.9%) were shown
to be higher in children from minorities, even after controlling for SES.
13
Emerging Threats and Future Scenarios
Overall, the prospects for child health over the next decades are contradictory. On one hand,
there is a continuous decrease in child mortality in all countries, accompanied by decreasing
trends in communicable diseases and injuries. On the other hand, as a consequence of
improved survival rates for very LBW infants and for children affected by severe diseases
and congenital anomalies, as well as of emerging issues such as obesity and immune
mediated disorders, there may be an overall net increase in the proportion of children
suffering from some kind of functional impairment and/or needing comprehensive care. The
widening inequalities across population groups and the rise in neurological and mental health
disorders are also matters of great concern.

29
These trends pose a series of challenges to society as a whole and to health systems in
Europe. These challenges will be better understood in the light of social determinants of child
health and the way they influence child health outcomes, particularly in the earliest years of
life.
References
1. Hauck FR, Tanabe KO. International trends in Sudden Infant Death Syndrome: stabilization of
rates requires further action. Paediatrics 2008;122:660-6.
2. Comitato Operativo Studio Hera. Mortality during the first two years of life in Italy: Sudden Infant
Death Syndrome (SIDS) and other unexpected deaths. Rapporti ISTISAN 2005/2; iii, 48 (in
Italian).
3. Office of National Statistics. Unexplained deaths in infancy, England and Wales, 2007.
Statistical bulletin, UK, 2009.
4. Health Statistics. Section B: life expectancy and vital statistics. Central Statistics Office, Ireland,
2008.
5. Berra S, Ravens-Sieberer U, Erhart M, et al. European KIDSCREEN group. Methods and
representativeness of a European survey in children and adolescents: the KIDSCREEN study.
BMC Public Health 2007;7:182.
6. Mackenbach JP, Stirbu I, Roskam AJ, et al. European Union Working Group on Socioeconomic
Inequalities in Health. Socioeconomic inequalities in health in 22 European countries. N Engl J
Med 2008;358:2468-81 (Erratum in: N Engl J Med 2008; 359: e14).
7. WHO. The European health report 2005: public health action for healthier children and
populations. WHO Regional Office for Europe, Copenhagen, 2005.
8. Edwards P, Green J, Roberts I, et al. Deaths from injury in children and employment status in
family: analysis of trends in class specific death rates. BMJ 2006;333:119–21.
9. WHO. The European health report 2009: health and health systems. WHO Regional Office for
Europe, Copenhagen, 2009.
10. Smith LK, Draper ES, Manktelow BN, et al. Socioeconomic inequalities in very preterm birth
rates. Arch Dis Child Fetal Neonatal Ed 2007;92:F11-F14.
11. Hjern A, Thorngren-Jerneck K. Perinatal complications and socio-economic differences in
cerebral palsy in Sweden - a national cohort study. BMC Paediatrics 2008;8:49.
12. Blackburn CM, Spencer NJ, Read JM. Prevalence of childhood disability and the characteristics
and circumstances of disabled children in the UK: secondary analysis of the Family Resources
Survey. BMC Paediatrics 2010;10:21.
13. Parslow RC, Tasker RC, Draper ES, et al; Paediatric Intensive Care Audit Network.
Epidemiology of critically ill children in England and Wales: incidence, mortality, deprivation and
ethnicity. Arch Dis Child 2009;94:210-5.

30
2. Determinants of Child Health
Human health is the product of a series of complex causal pathways, where the ultimate
causes, also known as proximal causes of health, disease and disability (e.g. infection or
injury), are also the consequence of a combination of individual (such as genetic
susceptibility),
c
and socially determined factors (e.g. education, housing, sanitation, nutrition,
social protection, relationships, access to care, life styles). This is even more so in the case
of children: the social, psychosocial and physical environments in which children are
conceived, born and raised, are major determinants of their health. As the WHO Commission
on Social Determinants of Health report Closing the Gap in a Generation states, ‘The
conditions in which people live and die are shaped by political, social and economic forces.
Social and economic policies have a determining impact on whether a child can grow and
develop to its full potential and live a flourishing life, or whether its life will be blighted’.
1
Social and environmental factors are particularly critical in the early life stages, i.e. from
conception to early childhood. Three decades of research have provided plenty of evidence
to support the concept that many diseases have causes that start as soon as, or shortly after,
conception, during pregnancy and in early life. Exposure to inadequate nutrition, chemical
and physical pollutants, social and psychosocial adverse conditions, infectious or other
harmful agents or processes, may interfere with early organ and system development,
disrupt metabolic pathways, modify disease susceptibility and ultimately have profound
effects, not only on outcome at birth, but also on health and development in infancy and
childhood, as well as over the entire life course.
2,3
Thus, what happens to mothers and
children is relevant for early child health and development, and it also has deep implications
for population health altogether. Many of the current increasing or decreasing trends of
diseases affecting children as well as adults (e.g. cardiovascular, respiratory and immune
mediated disorders) have their explanations in changes in exposures and practices occurring
from conception to the very early years of life.
This chapter first describes the underlying socio-economic determinants of child health and
how these factors have evolved over time in Europe. It then shows how public policies,
including health system policies, can modify the social environment and have an impact on
the underlying determinants as well as on child health. Finally, it provides an overview of risk
c
Genetics is not all inherited; rather it interacts with the environment and as a consequence is also to
some extent socially determined. For example, the way genes determine how biological systems work
may be modified, in some very small but important components, by environmental exposure. This is
called ‘epigenetics’ and there is growing evidence that it may play a role in the causality of disease.
Key Messages
• The social, psychosocial and physical environments in which children are conceived,
born and raised are major determinants of their health. Socio-economic status has a
bearing on parental education, maternal health, environmental exposure, infant and
child nutrition, access to care, and ultimately it contributes to health outcomes.
• Macroeconomic and fiscal policies, as well as public policies in various sectors,
including health, education, environment and legal status of minorities and migrants,
play a role at different levels of the causal pathways of health and disease, starting
from the early life stages. These policies may also contribute to the increase or
decrease of health inequities.
• Exposures and practices related to social determinants, from conception to the early
years of life, are relevant not only for early child health and development, but have
deep implications for population health altogether.
• Changing economic and social environments, as a consequence of economic
downturns, have a direct and indirect impact on child health and well-being.

31
factors to which children may be exposed over their different developmental stages, to
emphasise the importance of early investments to protect and promote child health.
2.1 Social and Economic Determinants
The ways social and economic determinants influence child health are complex and not
linear. First, among the various determinants, there are many interactions, synergies and
interferences. Second, the causal pathways are specific to health outcomes and populations,
that is to say that they vary depending not only on the outcome considered, whether for
example LBW or injury, but also on the population characteristics, whether for example
children living in poverty or second generation migrant children. As a consequence, if each
health outcome is to be adequately addressed, an in-depth analysis of its underlying causes
and contributing factors is required.
Nevertheless, it is undoubtedly constructive to have a general overview of how social
determinants may work. A first important aspect to note is that there is a hierarchy among
determinants, with SES usually playing a major role in shaping the built environment and,
influencing the parental educational level, as well as the role of women in society and the
legal status of migrants. Conversely, each of these factors may play an independent role and
contribute to influence intermediate factors such as nutrition, child education, access to
health care and social services, and its most proximal determinants, such as specific
diseases or conditions.
Health status is the product of a combination of social, biological and psychosocial factors
with a bearing on the exposure to risk factors (e.g. inadequate housing and sanitation
increase the likelihood of being infected) and on the susceptibility to disease (e.g. impaired
nutrition increases the likelihood of suffering from severe disease once infected). Figure 2.1
illustrates this hierarchy and will be used throughout this chapter to describe the role of the
main social determinants and of public policies.
Figure 2.1. Social and economic determinants of child health and their causal cascade.
Poverty and Employment
Poverty and low SES are the most important determinants of health in all countries, including
high income countries.
4
Poverty has a particularly profound impact on child health and well-
being, due to the child’s high vulnerability to its consequences.
5
Child poverty rates are defined as the proportion of children living in households with an
income lower than 60% of the average national income. They are, therefore, a function of
income distribution within each country. The fact that they vary widely across Europe is
mainly due to some countries being able to achieve relatively low child poverty rates by
income redistribution, through tax exemption, child benefits and subsidised services.
6
Reproduction
Nutrition
Parenting
Life style and
behaviour
Health
Environment
Education
Gender
Legal status
Vulnerability
to hazards
Exposure to
risk factors
Socio
Economic
Status

32
Nevertheless, in most EU Member States, poverty among children is, in general, 3% higher
on average than among the population as a whole. Only in Denmark, Finland and Germany
is the rate of child poverty lower than for the population as a whole.
7
In most EU27 countries,
children living in lone parent households and in large families are at an increased risk of
living in poverty. Children from migrant families, or from families belonging to minorities, are
more likely to be in poverty within European countries, with Roma children in the new
Member States and in candidate countries being particularly vulnerable to poverty.
8
Parental employment, particularly among mothers, is key to protect children from poverty.
Living in a household in which no adult is employed has been shown to be closely associated
with child poverty, accounting for approximately a quarter of all children at risk of poverty in
general, and for more than 40% in Belgium, Czech Republic, Ireland and the United
Kingdom.
9
Maternal employment, which has an even greater impact on child health,
increases in all European countries once the youngest child reaches 3 years of age.
10
In
2007, only in Cyprus, Denmark, Slovenia and Sweden, mothers of children younger than 3
years old, were more than 70% employed. In most European countries, with the exception of
Greece, Ireland, Italy, Malta, Romania, Spain and Turkey, however, over 70% of mothers
were employed once the youngest child was older than 5 years (Figure 2.2). These data do
not take into account changes since the global financial crisis. Data from around 2000 show
rates of children living in unemployed households, varying between less than 2% in Portugal
and Switzerland, to more than 10% in Hungary.
5
Figure 2.2. Maternal employment rates by age of youngest child, 2007 (Source: OECD, 2010).
Environment
Physical Environment
Poor housing conditions and homelessness are associated with poorer health in childhood.
In all European countries, those on low-income are more likely to experience poor quality
housing (Figure 2.3).
11
However, in some countries, even among those not living on low-
income, rates of housing problems are high. A recent study reported that 14% of children in
the United Kingdom live in overcrowded homes or houses unfit for human habitation.
12
Data

33
on homelessness affecting children in Europe are not readily available, yet in countries that
have undergone unstable political transitions, the number of children living on the streets has
increased dramatically.
13
The above mentioned UK study estimated that 1% of children aged
between 0 and 16 years of age are classed as homeless and live in temporary
accommodation.
12
Figure 2.3. Proportion of people with income above and below 60% of the national median
income reporting one or more housing problem* (Source: European Commission, 2010).
* no bath, shower or toilet; leaking roof; lack of natural light in dwelling
Access to clean water and sanitation is also strongly associated with poverty levels, and in
most EU12 countries as well as in Turkey it is also associated with rural living. Lack of clean
water and adequate sanitation increases the likelihood of a variety of infectious diseases,
particularly gastrointestinal, and also of some chronic conditions, such as malnutrition, and
conditions caused by exposure to water polluted by toxicants, such as nitrites.
14
Finally, living
in poor neighbourhoods puts children at greater risk of a variety of other environmental
hazards, including accidents and injuries, toxic chemicals, noise pollution and waste sites.
15
Family Environment
Over the last 40 years, there has been a marked trend to birth outside marriage across
European countries (Figure 2.4). In 1975, only 8% of births took place outside formal
marriage, while by 2005 the rate had risen to 35%.
16
The general trend across EU Member
States reveals considerable differences: Cyprus and Greece had rates of mere 4.4% and
5.1%, respectively, compared with Sweden (55.4%) and Estonia (58.5%). Extra-marital births
are made up mainly of co-habiting couples, although over the last 40 years, single
parenthood has also contributed to the trend. In 2008, about 8% of children in the EU27
countries were living in single parent households, with a range from 16% in Estonia and the
United Kingdom, to 4% in Cyprus, Greece and Spain.
11
Divorce rates have increased in many European countries, contributing to the increase in
children living in single parent households. Among 11, 13 and 15 year-olds in European
countries, between 9% to 16% live in lone parent households and between 1% to 14% live
with step-parents.
17
Living in single parent households is not a risk per se yet it does
increase the likelihood of living in poverty. Adopted children, particularly if adoption occurs
after infancy and early childhood, and if their origin is from other continents outside Europe,

34
have been shown to have an increased risk of mental health disorders and substance abuse,
following the results of a Swedish study.
18
Figure 2.4. Trends in extra-marital birth rates (Source: European Commission, 2008).
Education
Parental education, and particularly education of women of childbearing age, is widely
recognised as a key determinant of child health and well-being. The association between
maternal education level and child mortality is well known. It acts through improved family
planning, and consequently birth spacing, less teenage pregnancies, improved care during
pregnancy and better pregnancy outcome, improved care seeking and use of services.
19
In
Europe, there has been a trend towards completion of upper secondary education, such that,
in most countries, people between 25 and 34 years of age are much more likely to have
completed upper secondary education than those 55 to 64 years of age.
20
The increase has
been particularly marked in some countries: in Greece and Ireland rates have increased by
40% between the two age groups. Completion rates among 25-34 year-olds, however, vary
widely across countries: in Czech Republic, Slovak Republic and Slovenia, over 90% have
completed upper secondary education, compared to less than 50% in Portugal and Turkey.
Compared to their male counterparts, European women aged 18 to 24 years are more likely
to leave school with a higher level of secondary education. In 2007, women were less likely
than men not to be in further education or training (13.2% vs. 17.2%).
21
Child health is also
associated with early childhood education (day care and pre-school), which is in turn
associated with improved school performance, reduced behavioural problems and social
achievements later on in life.
1
Gender
Gender hierarchies permeate all aspects of life, governing how people live. Gender inequity,
defined as systematic differences in the distribution of benefits, power, resources and
responsibilities between women and men, shapes the health status for women, men, and
children.
22
The overall status of women, their education, their role in society and within their
family, is also directly linked to child health and well-being. Where women have a higher
social status and a more central role in decision-making, available resources, at public and
household levels, go to a greater extent to investments in child nutrition, welfare and
education, and ultimately contribute to improve child health outcomes.
23

35
Maternal education, as well as women’s status, along with social and religious norms, are
factors that affect reproductive styles and consequently reproductive outcomes.
Improvements in all these factors is the main explanation of a sharp decline in teenage
pregnancies since 2001.
24
In 2008, most countries showed less than 5% of all pregnancies in
girls younger than 20 years of age. The exceptions were: Poland 5.1%, Hungary 6.2%,
Estonia 6.5%, Malta 6.6%, FYR of Macedonia 6.7%, Lithuania 6.9%, Slovak Republic 7.1%,
United Kingdom 7.1% (in 2004), Latvia 8.1%, Romania 12.5% and Bulgaria 13%. At the
other end of the spectrum, many countries had, in 2008, percentages of pregnancies in
women over 35 years of age above 15%, with a maximum of 28% in Italy (2004) and
Switzerland.
25
Legal Status
Migration and Migrant Children
Migration movements in Europe have increased in size and complexity. About 7.6% of the
total EU population is foreign-born, and, according to national legislations, it is estimated that
between 2.6 and 6.4 million migrants are considered illegal. There has also been a marked
increase in migration within the EU, particularly from the new Member States to the richer
countries.
The definition of migrant includes short-term and long-term migrants, transit populations and
settled communities, people with and without legal residence papers, and first, second and
third generation migrants. Migrant children is a broad category that can include different
classifications of people coming from different countries, such as recently settled migrant
children with/without regular permits of residence, unaccompanied children, paperless
children, or asylum seekers. This lack of a common definition seriously jeopardises
comparisons within and between countries. There is little reliable EU-wide data on migrant
children, especially on those who may be in an undocumented situation. According to
EUROSTAT, in 2007 migrant children aged between 0 and 14 years, who had a citizenship
other than EU27, EFTA or candidate countries, reached 133,538. The EU countries with the
largest reported number of migrant children were: Spain (48,897), Italy (28,520) and Sweden
(10,176), while Bulgaria, FYR of Macedonia and Estonia had the smallest numbers. In 2009,
the country with the lowest reported number of migrant children was the Slovak Republic
(3,394), while Italy reported the highest number (862,455).
Migrant children face particular challenges and are vulnerable to a range of harming factors
including social exclusion, poverty and limited education opportunities. Their condition is of
course highly dependent on the overall condition and legal status of migrants in general, their
rights, their access to health care and welfare, including housing and schooling, and on the
conditions of migrant women in particular. A literature review of 65 studies comparing
pregnancy outcomes in migrant vis-à-vis native-born women in Europe from 1966 to 2004,
found that migrant women faced a 43% higher risk of bearing a LBW child, a 24% higher risk
of a preterm delivery, a 50% higher risk of perinatal mortality, and a 61% greater risk of
congenital malformations.
26
Many of the studies included in the review, controlled for
biological factors and/or SES, suggested that other factors particular to the migration
experience were salient.
Depending on host country’s legislation and prevailing attitudes towards migrant people,
migrant children may be subjected to discrimination based on nationality, origin, gender, and
religion. Those whose parents hold an illegal status are exposed to a combination of risks,
including those deriving from poverty, stress and lack of access to services. Unaccompanied
migrant children are at particularly high risk of exposure to violence, abuse and trafficking.

36
Roma Children
Roma people constitute Europe’s largest minority. Their number was estimated between 6.3
and 8.5 million people 10 years ago.
27
Considering that the proportion of children under 15
years of age was around 40%, and that fertility among the Roma has remained high, the
number of Roma children in the countries included in this report may vary between 3 and
almost 4 millions.
Roma children are paradigmatic of most vulnerable categories, since their condition includes
many dimensions of poverty (e.g. poor housing, low education, impaired nutrition), the
implications of belonging to a minority (e.g. discrimination, exploitation), and those of an
irregular legal status (in some cases, as most Roma children are European citizens). Roma
children show much higher infant and child mortality rates, higher rates of LBW, preterm birth
and IUGR, and higher incidence of recessive genetic syndromes. Communicable diseases,
injuries and exposures to environmental hazards are much more common than in the general
population.
28-30
Although there are important differences among groups depending on their
overall living conditions, belonging to a Roma group is a proxy measure for a range of
critically important health determinants, including attitudes, beliefs, values, social support,
languages spoken, religion, diet, family traditions, and social exclusion.
31
Maternal Health
In most countries, maternal mortality was less than 10 per 100,000 live births in 2008. The
highest values were recorded in Latvia (12.5), Romania (13.5), Slovenia (15.1 in 2007),
Hungary (17.2), Luxembourg (18.3 in 2007), Turkey (19.4) and Malta (23.8). Maternal
mortality tends to be underestimated due to misclassification and wrong definitions. In all
countries that have embarked in ad hoc studies, maternal mortality ratios have doubled or
tripled the official estimates. In all countries, maternal mortality is very closely associated with
low SES, but inequalities are higher in Southern and Eastern European countries.
Maternal health is an obvious crucial determinant of embryo-foetal development and health,
and has profound implications on health later in life. Over the last decades, the impact of
maternal health even prior to conception on pregnancy outcomes, and also on health over
the entire life span, has been altogether better understood. Exposure to environmental
toxicants including alcohol, tobacco and drugs, prior to conception and during pregnancy,
has been shown to affect early organ development and, consequently, it has been proven to
increase the risk of congenital anomalies, LBW and other health problems.
32
There are two emerging issues regarding the relation between maternal and child health.
One is that women who were previously unable to get pregnant or to bear children are now
able to do it thanks to advances in health care and medically-assisted conception. The other
is the fact that maternal age along with the prevalence of overweight and obesity, are
increasing. Both these factors contribute to a higher risk of complications during pregnancy
and a higher risk of adverse pregnancy outcomes.
In addition to the above mentioned biological factors, all influenced by social factors, the
health and social conditions of women have an impact on child health through two main
mechanisms: a) child nutrition, and b) parental attitudes and styles, which for both parents
are also shaped quite early during pregnancy and reflect in part the early experiences of the
new parents with their own parents. Child nutrition and parenting are strongly influenced by
the wider social context (Figure 2.5).

37
Figure 2.5. Parenting and nutrition, being in turn influenced by the wider social context, are the
most proximal determinants of child health and development.
Parenting Attitudes and Styles
Parenting is a complex activity that includes many specific behaviours that work individually
and together to influence child outcomes. Attachment to the primary caregiver over the first
years of life is a well-known determinant of the child’s self-esteem and way of relating with
the outside world. Although specific parenting behaviours may influence child development,
looking at any specific behaviour in isolation may be misleading, since specific parenting
practices are less important in predicting child well-being than the broad parenting style.
33
Type of family functioning, i.e. whether the family is cohesive, enmeshed or disengaged,
influences children’s adjustment during the early school years.
34
Maternal and, to a lesser
extent, paternal depression are also known to influence parental attachment in the first years
of life. Fathers’ involvement has been shown to have an influence on children’s
developmental outcomes as well.
35
Social attitudes to children and parenting styles vary
across European countries, depending on cultural and religious backgrounds. Over the last
decades, these attitudes have undergone profound modifications. Early interactions and
parenting styles remain fundamental in the early shaping of the child character and play a
particularly important role in the child’s cognitive and socio-emotional development.
Life style and Behaviour
Life style and behaviour depend on personal choice only in part. They are strongly
associated with the economic and social environment, and are influenced by social norms
and, increasingly, also by the media. This section focuses on life styles and behaviours of
major public health importance.
Nutrition
Nutrition starts in the mother’s womb. IUGR is the earliest indicator of foetal undernutrition.
IUGR may be caused by maternal undernutrition as well as by a variety of pregnancy
complications, chronic diseases and foetal anomalies. IUGR and prematurity reflect in LBW,
which is in turn, is strongly associated with infant morbidity and mortality. Prevalence and risk
factors for LBW will be discussed in Chapter 3.
Wider social, economic, cultural and policy context
Maternal health
Housing and
nutrition
Parental care
Child health and
development
Parental SES,
education and
legal status

38
Exclusive and prolonged breastfeeding has an important protective effect against a series of
diseases and conditions (Table 2.1). It may also enhance cognitive and intellectual
development.
36,37
Table 2.1. Protective effects of exclusive and prolonged breastfeeding.
Health outcome Average risk reduction
Acute otitis media 50%
Gastrointestinal infections 64%
Lower respiratory tract infections 72%
Atopic dermatitis 42%
Asthma 27%
Overweight and obesity 22%
Type 2 diabetes 38%
Acute childhood leukaemia 19%
Sudden infant death syndrome 36%
For this reason, the WHO, as well as most national policies and most professional
associations in Europe recommend, as a public health measure, exclusive breastfeeding up
to 6 months, and the continuation of breastfeeding, with adequate and safe complementary
foods, up to 1 or 2 years of age and beyond. Yet in all countries reporting data the rates of
exclusive breastfeeding at six months fall short of these recommendations (Table 2.2).
38
Table 2.2. Latest available national data on breastfeeding at different ages.
d
Any length of breastfeeding (%)
Country Year
At 3 months At 6 months
Exclusive breastfeeding
at 6 months (%)
AT 2005 55 10
BG 1996 42
CZ 2004 60 36 23
DK 2001 30
EE 2004 67 48 31
FI 2000 74 51
HU 2002 93 48 37
IS 2001/04 67 14
IT 1999 64 38 5
LV 2002 66 37 24
LT 2004 50 31 26
NL 2003 51 27 18
NO 1998 88 80 7
PL 1997 29
PT 1999 63 34
RO 1997 63 39 17
SK 2007 41
SI 2000 17
ES 2001/07 66 45 25
SE 2003 86 71 33
UK 2005 25 1
Complementary feeding covers the period between 6 months and 2 years of life,
approximately, and coincides with a particularly vulnerable developmental phase. Inadequate
complementary feeding, in quantitative and qualitative terms, may lead to malnutrition. It may
d
Given the different definitions and methods used in each country to gather data on breastfeeding,
caution should be observed when interpreting these rates.

39
also lead to underweight, stunting and wasting in low-income populations, and to overweight
and obesity in high-income ones. Very little is known about the adequacy of complementary
feeding and about feeding in pre-school and school children. In general, most local studies
show that the diet in these age groups is too rich in fats, sugar (often from sweet beverages)
and salt, and too low in fresh fruit and vegetables. Surveys on pre-adolescents show that
these bad habits tend to be carried over. For example, daily fruit consumption is low and
tends to decline with age; it varies between countries and within countries. It is lower among
11 and 13 year-old from low-income families. Similar findings are reported for the excessive
consumption of soft drinks.
39
Alcohol, Tobacco and Illicit Drugs
Alcohol is responsible for 11% of deaths in men and 1.8% in women in Europe.
40
Although,
in terms of population attributable harm, it impacts men disproportionately, alcohol abuse is
increasing among young women in EU countries,
41
causing ill-health and, potentially, foetal
abnormalities in case of pregnancy. Harm to women and children may also come indirectly
through men’s alcohol consumption, which can negatively impact the entire household
through increased poverty, abandonment, and intimate partner violence.
42
Moreover, alcohol
use may widen the gaps among socio-economic groups. Finally, alcohol consumption among
men and women prior to heterosexual intercourse has been associated with decreased
likelihood of using contraception or prophylaxis to avoid sexually transmitted infections.
43
About 40% of men and 18% of women smoke in Europe.
44
In most of Western Europe, the
prevalence of smoking is decreasing, or has at least stabilised. However, this is less so in
Eastern Europe, with a slight rise in prevalence among women in some countries. Smoking
tracks the socio-economic gradient within countries, particularly in Western Europe, with
young single mothers being particularly affected.
45
Tobacco advertising explicitly targets
women, strategically playing on norms of femininity to encourage more women to smoke.
46
The number of pregnant women who smoke may be high, with a study in France showing for
example that 28% of them smoke.
47
Smoking can cause ill-health among women who
smoke, and can lead to foetal complications, including LBW and decreased lung function.
48,49
Smoking behaviour can be established during adolescence; between 10% (FYR of
Macedonia) and 50% (Estonia) of 15 years-olds report their first smoking at age 13 or
younger. In most countries, boys are at a higher risk than girls.
39
Generally, illicit drug use is also more common among men than women.
50
However, women
do use drugs, and those who do, are less likely to seek health care services because of
poverty, concern about having contact with the state, or other factors. Existing services to
reduce drug-related harm may not be gender-sensitive nor have adequate links to sexual
and reproductive health services. This limits access to antenatal care, including prevention of
mother-to-child transmission of HIV.
Physical Activity
Inactive children, when compared with active ones, weigh more, have higher blood pressure
and lower levels of heart-protective high-density lipoproteins (HDL cholesterol). Even though
heart attack and stroke are rare in children, evidence shows that the process leading to those
conditions begins in childhood.
51
Physical activity has also been associated with psychological benefits in young people since
it improves their control over symptoms of anxiety and depression. Similarly, participation in
physical activity can assist in the social development of young people by building self-
confidence and providing opportunities for self-expression, social interaction and integration.
It has also been suggested that physically active young people adopt other healthy
behaviours more readily (e.g. avoidance of tobacco, alcohol and drug use). They also
demonstrate higher academic performance at school.
52

40
2.2 Social Policies and Health Systems as Determinants of Health
The WHO Commission on Social Determinants of Health report Closing the Gap in a
Generation states: ‘Social and economic policies have a determining impact on whether a
child can grow and develop to its full potential and live a flourishing life, or whether its life will
be blighted’.
1
This section will discuss health systems and related social policies insofar as
they have a bearing on access to health care, on its quality, and ultimately on child health.
Discussing health systems and social policies as determinants of health does not necessarily
mean recommending specific policies. This is not the role of this report, but of governments.
The impact of social determinants over child health can be profoundly modified by economic
policies (including the implementation of macroeconomic and fiscal policies for the
redistribution of income and alleviation of poverty), by social and, in particular, welfare
policies, by education policies (including pre-school services and parenting support), by
environmental policies, by legislation regarding migrants and legal status, and finally by
health system policies. By ensuring equitable and universal access, health services can
reduce the risk differential; on the contrary, not having access to quality care can increase
inequity (Figure 2.6). All this is even more important in times of economic crises which put
children’s health at an increased risk, and which may at the same time have a negative
impact on social policies and health systems (see box next page).
Figure 2.6. Policies to address social and economic determinants of child health.
Reproduction
Nutrition
Parenting
Life style and
behaviour
Health
Environment
Education
Gender
Legal status
Vulnerability
to hazards
Exposure to
risk factors
Socio
Economic
Status
Macroeconomic
and fiscal policies
Social policies: environmental and
gender policies, family benefits,
welfare, education, housing,
transport, etc.
Health system:
quality and
ease of access

41
Government Financial Support and Benefits for Families, Mothers and Children
Most European countries provide significant financial support to families with children in
order to combat child poverty and to assist parents with childcare responsibilities so as to
balance jobs and family life.
56
However, there is wide variation in the percentages of child
needs covered by social support. Among EU15 countries, Austria, Belgium, Ireland,
Luxembourg and the United Kingdom cover over 40% of child needs, compared to less than
20% in Italy, Portugal and Spain. Among EU15 countries, child benefit is universal and non-
means tested with the exception of Italy, Portugal and Spain. Universal benefits are more
likely to be taken up compared to those that are means-tested. Despite evidence that social
spending in early childhood is likely to be most effective in optimising child development, very
few EU countries (Finland, Hungary, Slovak Republic) spend a higher percentage of their
Economic Crises and Child Health
Children, particularly those living in low-income and migrant households, become more
vulnerable as a consequence of the economic downturns associated with economic crises.
53
Economic downturns affect key economic and social factors by reducing household incomes
due to unemployment, by reducing migrants’ remittances, particularly for EU12 countries,
and by lowering the capacity of the state to adequately finance social policies, including
health and education. It may be useful to distinguish the direct impact of these crises on
women and children, and the indirect impact produced by their consequences on social
spending.
Direct Impact
Many families experience a decline in living standards, particularly families with many
children and with disabled members, single parent families (especially single-mother ones)
and migrant families. Common coping strategies in crisis-affected households include
reducing expenditure on food and shifting consumption patterns to eat more cheaply, and
hence, less nutritious food,
54
and reducing expenditure on education and extra-curricular
activities for school children. Thus, if family income is reduced for prolonged periods,
children’s nutrition may suffer. A combination of pre-existing deprivation (e.g. overcrowded
housing and less cohesive social environments), and the additional stress of economic
insecurity and delaying seeking health care, may lead to worsening physical and mental
health among children and adults. Empirical data on the likely impact of economic crises on
child health and well-being are limited, yet there is good evidence, based on the economic
crisis in Finland in the early 1990s, that the well-being of children and adolescents was
compromised as a result of the pressure of economic problems on parents.
53
The increase in
mental health problems among children and young people in Europe, over the 20-year
period starting in the early 1980s, has been linked to changes in the labour market for young
people.
55
Thus, economic crises will impact on several economic and social/psychosocial
dimensions of household poverty and intrafamilial stress, which will then interact to produce
a variety of adverse outcomes that may have long lasting consequences and lead to the
reversal of previous gains.
Indirect Impact
To prevent major breakdowns and to ensure stability, most countries engage in marked
reductions of public spending during an economic crisis. Almost everywhere, health and
welfare systems represent privileged targets of government cuts in spending. Most national
economies, operate cuts in spending and consider more or less substantial trimming of the
health expenditure. Services for children, particularly important for those who are already in
a poor or low-income home, are significantly reduced in many European countries.
53
All
these effects combine to reduce the chances for the most vulnerable (old and new poor,
marginalised and minority groups, households depending on remittances if working
members become unemployed) to access quality health care, unless specific counteracting
measures are taken to improve targeting of programmes.

42
financial support on families with children in the early years.
17
Spending on the middle and
late years of childhood prevails in most countries. Figure 2.7 shows how child poverty rates
can be substantially reduced by public interventions.
57
Figure 2.7. Relative child poverty rates* before and after transfers (Source: Spencer, 2010).
* Living in households with an income of less than 60% of the average national income. Since child
poverty rates are relative to national income, the figures cannot be compared across countries;
however, what can be compared is the magnitude of change in child poverty rates after transfers.
The experience of Nordic countries (Denmark, Finland, Iceland, Norway, Sweden) in terms of
social policies gives an interesting and useful example of the general impact of social policy
on poverty, inequalities and health outcomes. The welfare states of the Nordic countries put
an emphasis on universal social policies (social spending, coverage of social insurance) and
have internationally low poverty rates, an outcome that seems to be influenced by a
redistributive welfare state system. Universal social policies have positive health
consequences. Among many European countries, family policies legislation, particularly dual
earner family support, well-developed in these countries, seems to be more important for
cross national infant mortality differences than Gross Domestic Product.
Maternity leave and maternity benefits play an important role in ensuring optimal pregnancy
outcomes, and are offered to pregnant mothers in all European countries. Hungary has the
most generous provision in terms of time allowed (24 weeks) and percentage of salary
(100%). Parental leave after the birth of an infant is offered in all countries, but there is wide
variation between countries in duration, financial support and flexibility.
58
Sweden has the
most generous scheme in terms of financial support, flexibility and duration (up to 480 days
for each child up to the age of 8 years). In addition to Sweden, Denmark, Finland, Hungary
and Slovenia offer a high or moderate earnings replacement rate. Other EU countries
provide a more modest allowance, or an unpaid leave. Figure 2.8 shows how higher family
policy generosity correlates with lower infant mortality.
59

43
Figure 2.8. Family policy generosity and infant mortality (Source: Ferrarini, 2010).
Policies for Migrant Children and their Families
In principle, migrant children are entitled to emergency care services across the EU,
regardless of their legal status, but many differences exist in the level of access to health
care, and these are based on migrant status. Full access to health care systems is generally
granted to those migrant children who possess a legal residence permit that gives them the
possibility of being included in the health insurance scheme and, therefore, grants them the
same rights and obligations as the host country’s children. Partial access to health care
services is guaranteed to refugees and asylum seekers, each country applying specific
regulations. Limited access, generally in life threatening situations, is guaranteed to the
remaining categories, i.e. undocumented and illegal migrant children.
This picture, consisting of different degrees of accessibility for migrant children, is in contrast
with the UN Convention on the Rights of the Child (CRC), ratified by all countries considered
in this report. According to the CRC, the right to health should be granted to all children
without any discrimination based on nationality or legal status. In their periodic reports to the
UN Committee on CRC, the majority of the state parties make reference to the category of
migrant children (article 24), although in different ways. Only a few state parties explicitly
mention special measures to guarantee access to health and health services for migrant
children. These measures refer to: prophylactic health examination and vaccinations, annual
medical check-ups, child psychiatric services, family planning assistance, and inclusion of an
intercultural collaborator in order to enhance the quality of services provided to migrants.
Other general mentions to the challenges of a multicultural society are made in some reports,
but the actions undertaken are usually generated in response to very specific cultural habits
of the migrant groups, for example the non-medical circumcision of boys or female genital
mutilation. In general, it can be said that a gap exists between the ratification of the CRC and
the practical integration of its contents into legislation and policies at national levels.
As far as education is concerned, access for migrant children is variable across countries.
Migrant children without residence permits are denied access to education in the Czech
Republic and Sweden, while other countries (Lithuania, Romania, Spain) allow access to all
children.

44
Provisions and Care for Children with Special Needs
Benefits for children with disabilities vary across Europe and include various combination of
financial coverage of extra cost for health care, special education, allowances, and non-
financial benefits for home care, education and transport. In general, most countries still
show gaps when it comes to adopting and implementing comprehensive policies for children
with special needs. These should include economic support to poor families, multidisciplinary
health care, inclusive education, home support and easy access to jobs. The Nordic
countries represent the model that comes closest to full support and inclusion.
Quality and continuity of care for children with complex diseases is still suboptimal and often
the access to quality care is hampered by socio-economic conditions of the family. In many
countries, policies and programmes to prevent child maltreatment are still insufficient and
child protection services are not yet able to respond to increased recognition of child
maltreatment through adequate institutional responses. Institutionalisation of children with
severe disabilities or who have been abandoned is still a major problem in some EU12
countries, in spite of some recent progress.
Gender Policies
Gender-based health and social services for women are rarely available. These include
services against domestic violence, which may not be available, or may be delivered in a
way that increases stigma.
60
At the same time, sexual and reproductive health services for
men may be too limited, leaving them without adequate health information, and also leaving
women responsible for pregnancy and prevention of sexually transmitted disease.
61
To
promote male use of services and shared responsibility of pregnancy, increasing male
participation in sexual and reproductive health decision-making is recommended, as is
promoting the use of male contraceptive, and improved gender-responsive services.
61,62
Maternal Health Policies
In most European countries, maternal health policies are adequate, yet in many countries
there are pockets of underserved communities, essentially for minority population groups.
For example, in some countries, Roma women still show very low or substandard antenatal
care, and skilled institutional delivery may not be available for all. Moreover, there is still a
tendency to give priority to the physical aspects of pregnancy and ignore the postpartum
needs of women, such as post-natal depression, and the preparation to childbirth and
parenting. This is important even in countries where maternal mortality and morbidity has
substantially decreased, though still subject to improvement.
As far as maternal nutrition is concerned, the large body of evidence on the adverse effects
of excess or under weight of women before and during pregnancy, as well as the lack of
important micronutrients in the maternal diet, has been taken into account to recommend
periconceptional supplements, to monitor weight and nutritional status of women during
pregnancy, and to advise mothers on healthy eating.
Policies to Support Parenting
Over the last decade, several countries have launched programmes to support parenting as
a strategy to promote children’s health and well-being. Support to parenting includes financial
and psychosocial support for those who need it the most, the provision of services such as
day care centres and other pre-school services, as well as programmes to prepare couples
to parenthood and to support them in their parental function after birth. These programmes
are based on home visits carried out by health professionals, but also on parental groups
and peer-to-peer groups. Practices such as reading aloud to children have been
recommended and are supported as a mean to enhance cognitive stimulation and optimal
attachment. Long exposure to television has been discouraged as have certain inappropriate

45
practices, such as corporal punishment. Eighteen European countries have outlawed
smacking of children by any adult, including parents, and others have altogether banned
corporal punishment in schools.
63
European countries also vary in the extent to which
children, and particularly breastfed children, are welcomed in public places reflecting different
attitudes to children and to their parents.
Child Nutrition Policies
A Blueprint for Action developed by the participants of a EU-funded project outlines the
actions to be included in and implemented by any national or regional plan, and addresses in
particular socially disadvantaged groups and children in difficult circumstances.
64
Specifically,
it recommends: a) the full implementation of the International Code of Marketing of Breast
Milk Substitutes and subsequent relevant World Health Assembly resolutions, including
mechanisms for enforcement and prosecution of violations and a monitoring system
independent of commercial interests; b) a maternity protection legislation that enables all
working mothers to exclusively breastfeed their infants for six months and to continue
thereafter non-exclusively; and c) the support to establish standards for best practice in all
maternity and child care institutions/services, the so-called Baby Friendly Initiatives. In
Europe, these are far from being fully implemented, though the number of ‘baby friendly’
hospitals and the percentage of births in them seem to be increasing.
38
Complementary feeding is also increasingly considered as a public health priority, along with
maternal nutrition and breastfeeding. A EU-funded project recommends that the promotion,
protection and support to breastfeeding up to 2 years and beyond be complemented by
adequate and safe complementary feeding from around the age of 6 months.
65
It also calls
on authorities to favour availability and access to safe and healthy food for infants, young
children and their families, and to give parents objective and evidenced-based information,
independent of commercial interests, on appropriate complementary foods and on how and
when to introduce them to their children.
During the second, and especially the third, year of life, the needs of children change and
strategies referring to children in pre- and primary schools, as well as adolescents, focus on
providing information regarding the importance of a varied and balanced diet along with daily
play and physical activity. They also centre on the need to create school, family and social
environments that encourage healthy eating habits and physical activity, and to restrict food
marketed directed at children.
Child Care/Early Childhood Education
In all European countries, some form of child care/early childhood education is provided,
however, as Figure 2.9 shows, enrolment rates vary widely.
20
For children who have just
been born and up to the age of 3, enrolment exceeds 50% only in Denmark and Iceland. In
Austria, Czech Republic, Greece, Italy and Poland, rates are under 10%. For children
between 3 and 5 years old, enrolment rates are generally higher in all countries, but vary
between 100% in Belgium, France and Italy, and less than 50% in Finland, Greece, Ireland
and Poland. In most countries, child care/early childhood education is publicly provided,
although in some countries such as the Czech Republic, Ireland and Poland, there is very
little publicly funded provision for children aged between 0 and 3 years. The exceptions to
the latter are the Netherlands and the United Kingdom, where private sector provision
dominates.
66

46
Figure 2.9. Enrolment rates in formal and informal childcare/early childhood education in 2005
(Source: OECD Family database).
Policies related to Alcohol, Tobacco and Illicit Drugs
Although health professionals, as well as professionals in the education sector, have an
important role in shaping individual and family behaviours, given that some of the most
effective policy measures are fiscal, regulatory or legislative, government and society bear
some responsibility in reducing child exposure to substances.
With regard to tobacco, the WHO Framework Convention on Tobacco Control has been
ratified by several EU countries.
67
Many countries have already banned smoking in public
places. However, insofar as private indoor environments are concerned, there should be a
focus on awareness-raising campaigns channelled by the media and by health and
education professionals. Regarding alcohol, effective policy and legislative interventions may
include: taxing alcohol sales, imposing laws on drink-driving with enforcement measures,
restricting retail outlets, and controlling advertising.
68
Over the last decade, most European
countries have already adopted this kind of measures.
Policies Promoting Physical Activity
In 2005, the EC set up a Platform on Diet, Physical Activity and Health to provide a common
forum for agents (governmental, non-governmental, private) interested in taking action to
contain or reverse current negative trends in physical activity, associated among other
factors with the obesity epidemic.
69
Based on the available Platform reports, few partners
seem committed to promote of physical activity. The majority of commitments relate to foods
and diet. Most guidelines published in the last 10 years, including those of the EU,
70
recommend a minimum of 60 minutes of daily moderately intense physical activity for
children and young people. This can be achieved by planning age-appropriate physical
activity at schools, recreational free-time physical activity, and transport-related physical
activity. Education and health professionals, in collaboration with parents and others in the
community, play an important role in implementing these plans. An additional aim is to
include the reduction of sedentary activities, such as the time spent watching television or
playing videogames.
Another initiative launched in response to the emerging challenges of obesity, is the WHO
European Ministerial Conference on Counteracting Obesity, held in 2006, with its European
Charter on Counteracting Obesity focusing on healthy nutrition and physical activity.
71
Also
the Transport, Health and Environment Pan-European Programme, launched in 2002,
provides support to mobility plans based on the promotion of safe cycling and walking for
children.
72
Some of these recommended policies have been adopted by EU countries and
included in their national policies as well as in their local initiatives.
73

47
Environmental Health Policies
The EU Registration, Evaluation, Authorisation and restriction of Chemicals regulation
(REACH),
74
introduced in June 2007, makes industry responsible for assessing and
managing the risks posed by chemicals and for providing appropriate safety information to
their users. Biomonitoring through harmonised methods and sampling is envisaged, also for
children.
75
The Children Environment and Health Action Plan for Europe (CEHAPE) has had
an impact at national and subnational levels across the region.
76
It has also stimulated
coordinated action on children’s health, cutting across departmental and sectoral boundaries
and involving different levels of government in countries. CEHAPE has positively influenced
interventions to reduce environmental risks for children’s health (90%), development of the
information and monitoring systems (95%), public information and awareness (95%), national
policy-making (80%), and intersectoral collaboration (90%).
77
Improvements in intersectoral
collaboration have mainly occurred between health and environment sectors, followed by
transport and education. CEHAPE has had a strong influence on countries in Europe to
develop national plans. The framework conventions on Tobacco Smoke and Persistent
Organic Pollutants (POP) have also been endorsed by the EU and are gradually being
applied at country level.
Health System Policies and Access to Care
A health system includes the pyramid of health facilities and associated resources that
deliver personal health services, and also non-personal health actions, for example anti-
smoking, diet and physical activity programmes. All the countries included in this report are
committed to ensure universal access to all essential services, and particularly to maternal
and child health services. This is achieved either through a prepaid tax based national health
service (e.g. Italy, Spain, United Kingdom), or through health insurance systems (e.g.
France, Germany).
Although based on the principle of universal access, health systems may fail to guarantee full
universal access for a variety of reasons, which include poor supply of services in
disadvantaged areas or for disadvantaged communities, discrimination, direct or indirect
payments, and demand factors such as cultural and religious norms hampering the access to
health services. There is also concern that some people may incur catastrophic levels of out-
of-pocket health spending. This risk increases as the government spending on health
decreases, and is often restricted to the poorest fifth (quintile) of the population. Households
impoverished due to spending on health, may cope by limiting food expense, with a negative
impact on child health and education. Bulgaria, Cyprus, Greece and Latvia are examples of
countries with high levels of out-of-pocket spending on health.
In a General Comment on the Right to Health, the European Economic and Social Council
identifies four components of access to health services: (1) non-discrimination, (2) physical
accessibility, (3) economic accessibility, including ensuring that poorer households are not
disproportionately burdened with health-related expenses, and (4) access to information,
including the right to seek, receive and impart information.
78
The provision of universal
access to quality preventive and curative services, including appropriate drugs for children
(see box overleaf), is, together with policies addressing social determinants and cross
sectoral policies, an essential factor in the further improvement of child health outcomes in
Europe.
The specificity of child health is that it requires specific interventions and investments in the
very early stages of life, starting from conception. To emphasise the importance of this, the
following section illustrates how the early exposure to risk factors can affect health outcomes
from the earliest developmental stages.

48
Drug Use in Children
Drug therapy is widely used in the treatment of diseases in childhood. Studies on drugs are
therefore important.
79
Many drugs prescribed to children are originally developed for adults
and they are often prescribed on an unlicensed or off-label basis by extrapolating data for
adults, without conducting any paediatric study.
80
Only 35% of commercially available drugs
in Europe are authorised to be used on children.
81
Unlicensed or off-label drug use affects
16-97% of children, depending on the country, the setting (community or hospital) and the
disease.
80
The use of off-label drugs exposes children to an increased risk of adverse drug
reactions.
82
In the last few years, many initiatives have been introduced at international level to
guarantee safe and effective treatments for children. In 2007, the EU adopted a Regulation
on Medicinal Products for Paediatric Use. For the purpose of this report, a questionnaire
was sent to 30 countries so as to acquire information on drug reimbursement policies and on
the availability of drugs licensed to be used in children. Twelve (40%) countries joined the
survey. In five countries (Czech Republic, Estonia, Germany, Latvia, Sweden) specific
reimbursement policies exist for drug prescribed to children. Only three countries were able
to provide information concerning the number of drugs licensed for children: Estonia (151
drugs), Hungary (778) and Italy (131). Drugs licensed to be used in children represented 13
to 19% of the drugs included in the national drug formularies.
Overall, nearly 60% of children receive at least one drug prescription and on average each
child receives three drug prescriptions per year.
83
The percentage of children receiving
drugs is higher in children younger than 6 years (70-80% of these children are exposed to
drugs). Antibiotics are the most frequently prescribed drugs, accounting for 20-33% of the
prescriptions dispensed to children, followed by respiratory drugs (10-25% of total
prescriptions) and analgesics (10-16%). Quantitative and qualitative differences between
countries are found for some drug classes. The percentage of children receiving at least one
antibiotic drug prescription is 14% in the United Kingdom, 18% in the Netherlands and 57%
in Italy.
84
The prevalence of drugs used for asthma treatment ranges between 5% in the
Netherlands and 26% in Italy. Regarding antidepressants, the highest prevalence is in
Iceland (2.3%), and the lowest in Denmark (0.2%). A similar profile is observed for
stimulants, with a prevalence ranging from 0.1% in France to 2.8% in Iceland.
The geographical differences in drug prescriptions depend on several factors: the
epidemiology of diseases; existing health care systems; drug regulations; national
pharmaceutical market structures; physician attitudes (i.e. diagnostic uncertainty, especially
for the youngest age groups, or differences in diagnostic labelling, time, or market pressure);
and socio-cultural and economic determinants related to patients and parents (i.e. patient’s
general condition or socio-economic status).
To improve the rational use of drugs in children, there is a need for further research on the
efficacy and safety of medicines within the paediatric population, as well as multicountry
prospective studies to monitor drug prescriptions to children, in particular for drugs for which
safety concern exists (e.g. psychotropic drugs). Regulatory interventions at national and
international level to harmonize drug licensing systems are also vital. Finally, educational
interventions for health professionals and parents should be implemented.

49
2.3 Exposures and Risk Factors over the Earliest Life Stages
The recent decade of research has provided further evidence for the idea that many
diseases and conditions that arise in childhood, but also much later along the life course,
may have causes that start as soon or shortly after conception and quite often in the earliest
years of life. Exposure to inadequate nutrition, to chemical and physical pollutants, to social
and psychosocial adverse conditions, to infectious or other harmful agents or processes may
interfere with early organ and system development, disrupt metabolic pathways, modify
disease susceptibility and have profound effects not only on outcome at birth, but on health
status during infancy and childhood and over the entire life course. Developmental plasticity
is affected, at least in part, by epigenetic changes that are established in early life and
modulate gene expression during development and maturity in mammals. The available data
are now beginning to provide a molecular basis for epidemiological and experimental
evidence that shows that the early period of life is critical in determining ensuing
susceptibility to chronic non-communicable diseases, such as obesity, type 2 diabetes and
cardiovascular dysfunction.
85
New insights are provided and will be provided in the future by
ongoing longitudinal cohort studies (see box).
Thus, what happens to mothers and children since conception is relevant, not only for early
child health and development, but also for the general implications on the population’s
health. Many of the current increasing (e.g. obesity, cardiovascular, respiratory or immune
mediated disorders) or decreasing (e.g. most infectious diseases) trends of diseases
affecting children as well as adults, have their explanation in changes in exposures and
practices occurring in the early years of life. Table 2.3 offers an overview of how the main
exposures to factors mentioned in this chapter, are associated to specific health risks, and
how, in turn, these are distributed along the early life stages.
The Importance of Birth Cohort Studies
Over the last two decades an increasing number of longitudinal cohort studies, starting
from pregnancy or birth, have been launched in various parts of the world. There are also
many more in the progress of being set off. Europe has given an outstanding contribution
through the establishment of national birth cohort studies (BCS) – the Helsinki BCS, the
Danish BCS, and so forth – and through collaborative BCS, such as the European
Longitudinal Study of Pregnancy and Childhood.
86
BCS have already provided important
contributions to our understanding of how social and environmental factors, parental
practices and attitudes, and medical and social interventions, shape biological
mechanisms and behavioural patterns and influence health outcomes. One of the key
messages arising from these is that the potential of BCS for scientific output can be
maximised by collaboration between studies, a prerequisite being that cohorts be well
documented, and that data on the existing cohorts be collected in a comparable way and
be easily accessible. Collaborative networks centres and websites (www.birthcohort.net
)
have been established to serve this purpose.

50
Table 2.3. Overview of exposures and risk factors and their impact on health over the first 12
years of life
Main
exposures
Main health
risks
Embryo-
foetal life
Birth to
2 years
Preschool
(3-6 years)
School
(7-12 years)
Poor maternal
health
Poor pregnancy
outcomes, LBW
++++ +++ ++ ++
Inadequate
nutrition during
pregnancy and
the early years
Over and
underweight,
anaemia,
infections,
immune disorders
++ ++++ ++ ++
Inadequate
parenting
Psychosocial
problems and
behavioural
disorders
++++ ++ ++
Discrimination
and social
neglect
Psychosocial
problems
++ +++ ++ ++
Environmental
toxicants
Congenital
anomalies, lung
diseases,
neurotoxicity,
endocrine
disorders, cancer
+++ +++ ++ +
Unsafe home
and outside
environment
Injuries + ++ +++ +++
Insufficient
physical activity
Obesity,
cardiovascular
and metabolic
risk in adult life
+ + ++ +++
Alcohol and
tobacco
Congenital
anomalies, LBW,
respiratory
disorders
++++ ++ + +(++)
Implications of New Knowledge on Health Consequences of Early Exposures
Exposure to risk factors can be modified by public policies and interventions as well as, in
most cases, by individual actions. Within public policies, health systems have a unique,
although not exclusive role, in preventing exposure and ensuring effective and equitable
care. As stated above, the likelihood of being exposed to risk factors depends primarily on
the conditions in which children are conceived, and in which they grow and live and on a
wide range of material, psychosocial, environmental and behavioural underlying factors.
Addressing these risk factors and their underlying social determinants across the range of
domains implicated, requires an integrated response. In most cases, it will also require an
approach from the government in full collaboration with civil society, local communities, the
private sector and international institutions and agencies.

51
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54
3. Perinatal Conditions
Many of the current increasing or decreasing trends of diseases affecting children as well as
adults can be explained through changes in exposures and practices occurring from
conception to early life, including the perinatal period. This chapter describes the most
important conditions that affect mothers and infants in this period, with a bearing later in life.
Main Sources of Information
Most data and information used to write this charter were derived from the general sources
already mentioned in the Introduction (EUROSTAT, the WHO and OECD databases,
UNICEF Child Info and State of the World’s Children annual reports). An important source of
information to which the reader is referred to for details and in depth analysis is the report of
the EURO PERISTAT project and its related scientific publications
(http://www.europeristat.com/). This report deals also with the problem regarding the
completeness and accuracy of data gathered in EU, EFTA and candidate countries.
Size of the Problem
Perinatal mortality, i.e. the sum of foetal deaths and of early neonatal deaths (i.e. deaths in
the first week of life) per 1,000 births (live and stillbirths) has been decreasing for decades in
Europe. A foetal death is defined as one occurring when the foetus has completed 22 weeks
of gestation. However, not all countries use the same cut off in their statistics; some
countries use the old 28-week cut off. Data on stillbirths therefore cannot be compared
unless they are standardised by week of gestation. The foetal death component of perinatal
mortality can be further broken down into deaths before and during labour. Using the data
reported by countries, irrespective of the gestational age cut off, the lowest foetal mortality
rates, around 3 per 1,000 births, are reported by Germany, Luxembourg, Slovak Republic,
Spain and Sweden; the highest foetal mortality rates are reported by the Netherlands (7 per
1,000), Romania (8 per 1,000), France (9 per 1,000) and Bulgaria (10 per 1,000).
1
Even
higher rates are reported by the FYR of Macedonia (10.5) and Turkey (14.4),
2
and for the
latter, there are reports of even higher rates (18 per 1,000 live births, with much higher rates
in some provinces).
3
The high value in France is due mainly to late terminations of
pregnancy, allowed by the legislation. The relatively high rate of foetal and perinatal mortality
in the Netherlands, which in effect showed a decline between 2000 and 2006, may also be
explained by the high proportion of late terminations of pregnancy; other factors that may
play a role are the restrictive policies to resuscitate and to perform intensive treatment on
very preterm infants, the late start of a prenatal screening programme for congenital
anomalies, a high prevalence of women of non-western origin, and a large share of very
preterm infants with a high proportion of congenital anomalies.
4
Substandard care and home
birth do not seem to be associated with higher perinatal mortality. The rates of foetal death
are lower, about half, if calculated only for births of foetuses 28 weeks of gestational age or
Key Messages
• Many of the current increasing or decreasing trends of diseases affecting children
as well as adults have their explanations in changes of exposures and practices
occurring from conception to very early life, including the perinatal period.
• The most important indicators of perinatal health (perinatal mortality, LBW) portray a
favourable situation in Europe compared to other regions of the world. There are,
however, important inequalities among and within countries.
• Better nutrition and reduced exposure to smoke, alcohol and other substances
before conception and during pregnancy, as well as social benefits associated with
long maternity leave, are the key preventive strategies, especially for women of low
socioeconomic status.
• Universal access to appropriate quality care in pregnancy, at childbirth, and for LBW
and preterm infants, should be ensured in all countries.

55
more. When foetal death rates from 28 weeks of gestational age are used, those of France
and Netherlands are similar to those recorded in countries with the same degree of
development.
Figure 3.1 shows the rates of early neonatal mortality.
1,3,5
Turkey has clearly and by far the
highest rate, followed by FYR Macedonia, Romania and Bulgaria. All the other countries
have values of around 1-3 per 1,000 births, the lowest rate being the one recorded by the
Czech Republic: 1.3 per 1,000 births.
Figure 3.1. Early neonatal mortality by country, estimates for 2004 or latest available year.
0 2 4 6 8 1012141618
AT
BE
BG
CZ
DK
EE
FI
FR
DE
EL
HU
IE
IT
LV
LT
LU
MT
NL
PL
PT
RO
SK
SI
ES
SE
UK
HR
MKD
TR
IS
NO
CH
early neonatal death per 1,000 live birth
LBW, less than 2500 g at birth, and in particular very LBW, less than 1500 g at birth, as well
as high birth weight, 4500 g or more, are closely associated with negative perinatal and
longer term outcomes. LBW infants represent slightly less than 7% of all births in high
income countries; very LBW infants account for about 1% of all births.
1,6
In Europe, the rate
of LBW ranges between 4% and 11% and, in most countries, has been increasing – slightly
but progressively – between 1980 and 2007, with the exception of Sweden, Luxembourg,
Poland and Hungary, the highest increases being recorded in Spain (over 170%) and
Portugal (almost 70%) (Figure 3.2). The highest values were recorded in Turkey, Greece and
Hungary, while the Nordic countries present the lowest rates. The rates of preterm birth have
increased in parallel with those of LBW. Multiple births have a higher probability of LBW. The
improved survival of very LBW and preterm infants have partially contributed to the increased
incidence of developmental disabilities.

56
Figure 3.2. Rates of LBW and changes between 1980 and 2007 (Source: OECD, 2009).
0
2
4
6
8
10
12
IS
SE
FI
LU
IE
NO
PL
NL
CH
DK
IT
FR
DE
UK
AT
CZ
SK
ES
PT
BE
HU
EL
TR 2003
LBW %
-50
0
50
100
150
200
change %
LBW (<2500g) % change over period
Infants may be born with LBW because they are born preterm, because of IUGR, or due to a
combination of these two. IUGR is a risk factor per se for poor perinatal outcome and later
consequences, such as overweight and obesity associated with rapid catch up growth.
7
Ideally, in order to understand the relative importance of preterm birth and IUGR, the birth
weight distribution, or the rates of LBW and very LBW, should be presented by gestational
age. Foetal deaths should be presented in the same way. In practice this is rarely done. The
overall rate of preterm birth varies between 4% and 11% in Europe, with the lowest rates
reported by the Nordic and Baltic countries plus France, while the highest rates are recorded
in Austria and Germany.
1
Infants born at less than 32 weeks of gestational age represent
about 1% of all births. Part of the variation may be due to the different methods used to
ascertain gestational age at birth (ultrasound, registration of the last menstrual period, clinical
judgement based on predefined criteria, or a combination of these). Multiple births are much
more likely to be preterm. As for all other health indicators, there is a social gradient also for
LBW and preterm birth, as discussed in Chapter 2.
The mode of delivery is strictly associated with maternal and perinatal health outcomes. This
report will only remind the reader of the rapidly increasing rates of caesarean section in most
countries in the past two decades. In the 1980s, the rates of caesarean section used to
range between 10% and 15%. They are still in that range in the Czech Republic, Estonia,
Finland, Lithuania, Netherlands, Slovenia, Sweden and Norway. Yet, in other countries, they
have soared well above 20%, with peaks over 35% in Portugal and Italy, where in some
areas rates may be as high as 60%. To understand the determinants and consequences of
such an excess of caesarean sections, and to obtain further details, readers are referred to
other reports.
1,8

57
Causes and Risk Factors
Exposure to tobacco, alcohol and drugs prior to conception and during pregnancy has been
proved to affect early organ development and, consequently, it is known that it may also
increase the risk of abortion, congenital anomalies, IUGR, LBW, preterm birth and other
health problems, with long term and even lifelong consequences, such as obesity.
9
In the
past two decades, the proportion of women smoking during pregnancy has decreased in all
countries, yet smoking continues to account for a substantial proportion of perinatal
problems.
10
Among countries with data, Denmark, Estonia, Finland, Germany, Latvia,
Netherlands, Spain, Slovenia, the United Kingdom and Norway have shown rates of over
10% of smoking in pregnancy. France is the only country reporting a rate over 20%.
1
Many
women give up alcohol when pregnant, yet some continue to drink, ranging from 25% in
Spain to 35%-50% in the Netherlands and the United Kingdom.
11
Heavy drinking is confined
to a smaller but significant proportion of women. Women with low social class and poor
levels of education are more likely to continue to drink in pregnancy.
Nutrition starts in the mother’s womb. IUGR is the earliest indicator of foetal undernutrition,
which may be caused by mother’s undernutrition as well as by a variety of pregnancy
complications, chronic diseases and foetal anomalies. IUGR and prematurity reflect in LBW,
which is strongly associated with infant morbidity and mortality. Risk factors for LBW and
preterm birth include short or long birth intervals, teenage pregnancy, previous history of
LBW, smoking, consumption of alcohol and drugs, poor nutrition before and during
pregnancy, stress, violence, abuse and trauma, low parental SES, and in-vitro fertilisation.
12
The increasing use of assisted reproductive techniques for the management of infertility, of
which in-vitro fertilisation is only one, has an important bearing on perinatal health, in addition
to its association with LBW. Infants conceived with these techniques have also a higher risk
of preterm delivery, congenital anomalies and perinatal death, as well as multiple pregnancy.
Births after in vitro fertilisation account for about 2% of all births in Europe; those including
other forms of assisted reproductive technique show a higher percentage, up to a maximum
of about 5% in France.
1
Compared with singletons, infants born from multiple pregnancies show a higher risk of
stillbirth, neonatal and infant death, associated with the higher probability of LBW and
preterm birth. Multiple birth rates vary from under 12 per 1,000 women with live or stillbirths
in Latvia, Lithuania and Poland, to more than 20 per 1,000 in Cyprus, Denmark and the
Netherlands.
1
Risk factors for an increased rate of multiple births include advanced maternal
age and the use of in vitro fertilisation methods.
Young (under 20 years old) and advanced (35 years old and over) maternal age are
associated with increasing rates of preterm birth and IUGR, and therefore with higher
perinatal mortality and other early and late complications. Young and old pregnant women
are also more likely to have multiple births and to deliver by caesarean section. The risk
factors for young and advanced maternal age include low SES and education, and poor
access to contraceptive and antenatal care services. The percentage of pregnancies in
adolescence has already been discussed in Chapter 2. The percentage of older mothers
ranges from 7.5% in the Slovak Republic to 24.3% in Ireland; percentages over 20% are also
found in Germany, Italy and the Netherlands.
1
Parental education, and particularly education for women of childbearing age, is widely
recognised as a key determinant for child health and well-being, and has already been
discussed in Chapter 2. It acts through improved family planning and consequently through
birth spacing and less teenage pregnancies, but also through improved care during
pregnancy and better pregnancy outcome, improved care seeking and better use of
services.
13
Migrant women are known to have poorer pregnancy outcomes due to lower
education and SES, and consequent poor access to good quality preventive and curative
care, associated with language barriers as well. Even within migrant women there are

58
disparities related partly to their country of origin, and partly to their particular situation,
including occupation, in the host country. Migrant women, or women born in a different
country to their country of residence, account for 7%-31% of all births in countries reporting
these data, with the highest values in Austria (26%), Cyprus (31%) and England and Wales
(21%).
1
Challenges
As stated in this chapter and in the reports of the PERISTAT project, there is still a lack of
standard definitions and methods as far as data and indicators for perinatal health are
concerned, especially regarding foetal deaths and the ascertainment of gestational age. This
remains a challenge for information systems.
The most important challenges, however, as far as foetal and early neonatal health are
concerned, relate to the improvement of woman and maternal health and health care before
conception and during pregnancy and delivery. This is done primarily through the protection
of women and mothers in the labour force, as already discussed in Chapter 2, and through
health systems, which have a unique, although not exclusive, role in preventing exposure to
toxic, infectious and nutritional threats, and ensuring effective and equitable care.
In most countries, more than 90% of pregnant women use antenatal care services. The
coverage is lower in some Eastern European countries (Estonia 86%, Lithuania 74%, Slovak
Republic 80%) and surprisingly in England (66%) and Scotland (78%).
1
Very little is known
about the quality of antenatal care. Because maternal smoking is the most important
preventable factor associated with adverse pregnancy outcomes,
14
and smoking cessation is
considered one of the most effective interventions for improving maternal and child health,
the proportion of women that quit smoking during pregnancy may be used as an indicator of
the quality of antenatal preventive healthcare services.
15
Other interventions shown to be
effective in reducing the risk of LBW and preterm birth that could be included as quality
indicators of perinatal health care services are:
• Measures to reduce teenage pregnancy;
• Counselling and support to achieve a balanced diet, that includes iron and other
micronutrients;
• Avoidance of excess weight gain, depending on pre-pregnancy BMI, through adequate
intake of calories and physical activities;
• Measures to reduce the use of alcohol and drugs;
• Treatment of maternal conditions such as infections and diabetes;
• Reduction of multiple births after assisted reproductive techniques.
12
Childbirth care is available virtually to all women in Europe, though quality may vary among
and within countries. Most of this care is provided in hospitals, the Netherlands being the
only country where a substantial proportion of births and hence childcare take place in the
home (around 30%) or in community birth centres (around 10%), usually assisted by a
midwife. These figures are decreasing, especially in the past two years, after the highly-
debated publication of studies questioning the safety of home births.
16
Hospitals delivering
less than 500 infants per year are believed to provide low quality care. In some countries the
rate of deliveries in these hospitals is lower than 3% (e.g. Denmark, Ireland, Portugal,
Sweden), while in others it is higher than 15% (Estonia, Germany, Latvia, Lithuania) with a
highest of 68% in Cyprus among countries providing data.
1
The challenge is to ensure high
quality care through a network of hospitals and birthing places in which timely referral
ensures that all mothers and newborns are optimally managed at the adequate level of care.
The care offered to preterm and LBW infants is particularly important. Babies born before 32
weeks of gestational age account for only 1-2% of all births, but access to good intensive
care for them is associated with increased survival and reduced rates of long-term problems
and complications. Transport in the womb and birth in a maternity with a large neonatal
intensive care unit (NICU) is the prerequisite for good care. The percentage of very preterm

59
infants who are born at the highest level of care varies from 33% in Latvia to 94% in
Denmark.
1
However, the definition of a level 3 NICU varies among countries and it is difficult
to interpret this indicator. The challenge here is to standardise and clearly designate the
highest level of care where there might be a concentration of the majority of births of very
preterm infants. It is also important to fully involve parents in decision-making and general
care,
17
to individualise developmental care for these infants,,
18
to prevent and control
infections and treat complications, and to maintain adequate nutrition and stable
temperature. All this can be facilitated by the implementation of Kangaroo Mother Care.
19
References
1. European Perinatal Health Report. Better statistics for better health for pregnant women and
their babies. EURO PERISTAT Project 2008 (http://www.europeristat.com/bm.doc/european-
perinatal-health-report.pdf).
2. Stanton C, Lawn JE, Rahman H, et al. Stillbirth rates: delivering estimates in 190 countries.
Lancet 2006;357:1487-94.
3. Erdem G. Perinatal mortality in Turkey. Paediatr Perinat Epidemiol 2003;17:17-21.
4. Ravelli ACJ, Tromp M, van Huis M et al. Decreasing perinatal mortality in the Netherlands,
2000-2006: a record linkage study. J Epidemiol Community Health 2009;63:761-5.
5. WHO. Neonatal and perinatal mortality: country, regional and global estimates. WHO, Geneva,
2006.
6. OECD. Health at a glance 2009: OECD indicators. OECD, Paris, 2009.
7. Monasta L, Batty GD, Cattaneo A, et al. Early-life determinants of overweight and obesity: a
review of systematic reviews. Obesity Reviews 2010;11:695-708.
8. Lauer JA, Betrán AP, Merialdi M, et al. Determinants of caesarean section rates in developed
countries: supply, demand and opportunities for control. World Health Report 2010 Background
Paper, No 29. WHO, Geneva 2010.
9. Tamburlini G, Von Ehrenstein OS, Bertollini R (editors) Children’s health and the environment: a
review of evidence. European Environment Agency and WHO Regional Office for Europe,
Copenhagen, 2002.
10. Salihu HM, Wilson RE. Epidemiology of prenatal smoking and perinatal outcomes. Early Hum
Dev 2007;83:713-20.
11. Anderson P, Baumberg B. Alcohol in Europe: a public health perspective. A report for the
European Commission. Institute of Alcohol Studies, UK, 2006.
12. Ohlsson A, Shah P. Determinants and prevention of low birth weight: a synopsis of the
evidence. Institute of Health Economics, Alberta, Canada, 2008.
13. WHO/EURO. The European health report 2005: public health action for healthier children and
populations. WHO Regional Office for Europe, Copenhagen, 2005.
14. Ershoff D, Ashford TH, Goldenberg R. Helping pregnant women quit smoking: an overview.
Nicotine Tob Res 2004;6 Suppl 2:S101-5.
15. Lumley J, Oliver SS, Chamberlain C, et al. Interventions for promoting smoking cessation during
pregnancy. Cochrane Database Syst Rev 2004(4):CD001055.
16. de Jonge A, van der Goes B, Ravelli A et al. Perinatal mortality and morbidity in a nationwide
cohort of 529688 low-risk planned home and hospital births. BJOG 2009;116:1177-84.
17. Davidson JE, Powers K, Hedayat KM et al. Clinical practice guidelines for support of the family
in the patient-centred intensive care unit: American College of Critical Care Medicine Task
Force 2004-2005. Crit Care Med 2007;35:605-22.
18. Als H, Lawhon G, Duffy FH, et al. Individualized developmental care for the very low-birth-
weight preterm infant. JAMA 1994;272:853-8.
19. Nyqvist K and an Expert Group of the International Network on Kangaroo Mother Care. State of
the art and recommendations. Kangaroo mother care: application in a high-tech environment.
Acta Paediatr 2010;99:812-9.

60
4. Congenital Malformations
Congenital malformations are structural defects present in a baby since birth. They are part
of the larger group of birth defects that includes also those without a clear structural anomaly,
e.g. deafness, intellectual disability, metabolic and haematological disorders. In a
malformation, the development of a structure is arrested, delayed, or misdirected early in
embryonic life, and the effect is permanent. The impact of congenital malformations on health
is extensive. It varies from lethal conditions, to more or less severe conditions requiring
medical or surgical interventions, to mild cosmetic anomalies. A full list of congenital
malformation can be found in chapter Q of the ICD-10 (see glossary). This report deals only
with major congenital malformations of public health importance, those with a significant
impact on mortality, morbidity or disability. Note that some congenital malformations are rare
diseases, since many have an incidence of less than 5 per 10,000 people.
Main Sources of Information
The best sources of information in Europe are the 41 ongoing Birth Defects Surveillance
Programmes, operating in 21 countries, some of them since the early 1970s National data
are available only for eight countries: Czech Republic, Finland, Hungary, Malta, Norway,
Slovak Republic, Sweden and the United Kingdom. In 13 countries (Austria, Belgium,
Denmark, France, Germany, Ireland, Italy, Netherlands, Poland, Portugal, Spain, Croatia,
Switzerland) only a partial coverage of the population exists, ranging from 3% in Germany to
69% in Poland. No systematic registration exists in the remaining countries.
1,2
In Turkey, and
probably in other countries, data are available from specific surveys. Despite many efforts to
standardise registration procedures (e.g. inclusion/exclusion criteria, diagnosis, reporting,
coding), the level of accuracy is variable and comparisons are not easy.
3
For a realistic
picture, recorded data should be analysed critically to obtain reasonable estimates, taking
into account the global epidemiological literature.
Key Messages
• Congenital malformations account for an important proportion of child deaths and
long-term disabilities. Prevalence at birth is estimated at around 2% of all live births;
the estimate rises up to 3% when elective terminations of pregnancy, carried out
when malformations are identified prenatally, are included.
• The most common malformations of public health importance are: congenital heart
defects, hypospadias, Down syndrome, cleft lip with or without cleft palate,
anencephaly and spina bifida, hydrocephalus, limb deficiencies, oesophageal
atresia/stenosis, anorectal atresia/stenosis, diaphragmatic hernia, omphalocele and
gastroschisis.
• Causes and risk factors include genetic anomalies, unhealthy lifestyles and nutrition,
some chronic maternal diseases, prenatal exposures to drugs causing
malformations and environmental pollutants. Maternal age is also a factor.
• Temporal trends vary in relation to changes in exposure to risk factors and active
preventive policies. Increasing trends are reported for gastroschisis and Down
syndrome, decreasing trends for anencephaly and spina bifida.
• Preventive interventions include the effective control of known causes and risk
factors, preconception counselling, and early recognition followed by effective
treatment.

61
Size of the Problem
Prevalence
For many years, the rate of congenital malformations has been expressed as birth
prevalence. This is a function of incidence, i.e. the rate of products of conception affected by
a malformation, and survival, i.e. the proportion of affected products of conception that
survive to birth (stillbirth or live birth).
4
The diagnosis was made at birth, after birth, or during
the first years of life. With the spreading of prenatal diagnosis and of elective termination of
pregnancy of severely malformed foetuses, a different measure was needed. This is the so-
called total prevalence, which includes also foetuses electively terminated during pregnancy
for the presence of a congenital malformation. Where this is not permitted, birth prevalence
remains the only meaningful measure; where it is permitted, the old birth prevalence cannot
be compared with the new total prevalence. This applies in particular to some congenital
malformations such as Down syndrome and other chromosomal anomalies. Also, birth
prevalence in a country where elective termination of pregnancy is permitted cannot be
compared with total prevalence in a country where it is not, especially for congenital
malformations in which spontaneous foetal loss is frequent. Finally, total and birth prevalence
should always include cases diagnosed after birth and within the first years of life (usually up
to 1-7 years).
The most reasonable estimate for the number of cases with a congenital malformation
delivered in the European countries included in this report is in the order of 200,000 per year.
In the EU27 countries it is approximately 160,000 per year (Table 4.1). This estimate
assumes a total prevalence of 3%, as suggested by a critical analysis of the recorded total
prevalence in the 41 Birth Defects Surveillance Programmes in 21 countries, and based on
the widely accepted hypothesis that the overall frequency is similar in every country
worldwide, small variations being limited to selected malformations. The total number of
births in 2008 (2007 for Belgium and Italy), as reported by EUROSTAT, has been used for
these calculations.
Table 4.1. Estimated number of deliveries with a congenital malformation in 2008
Country Estimated Number Country Estimated Number
AT 2,333 PL 12,435
BE 3,723 PT 3,138
BG 2,331 RO 6,657
CY 276 SK 1,721
CZ 3,587 SI 655
DK 1,951 ES 15,572
EE 481 SE 3,279
FI 1,786 UK 23,831
FR 23,881 HR 1,313
DE 20,475 MKD 688
EL 3,549 TR 37,870
HU 2,974 IS 145
IE 2,252 LI 11
IT 16,918 NO 1,815
LV 718 CH 2,301
LT 1,052 EU27 161,406
LU 168 EFTA countries 4,271
MT 124 Candidate countries 39,871
NL 5,539 Total 205,548

62
Overall, the cases with one or more of the following 14 malformations amount to
approximately 50% of all malformations: congenital heart defects, hypospadias, Down
syndrome, cleft lip with or without cleft palate, anencephaly and spina bifida, hydrocephalus,
limb deficiencies, oesophageal atresia/stenosis, anorectal atresia/stenosis, diaphragmatic
hernia, omphalocele and gastroschisis. An estimate of the annual number of deliveries
associated with these 14 malformations is shown in Figure 4.1.
Figure 4.1. Estimated annual number of deliveries associated with 14 selected malformations in
the countries of this report.
Due to the increased number of prenatal diagnoses of malformation, elective termination of
pregnancy after a diagnosis of severe congenital malformation is increasing in countries
where termination is legally allowed, namely, all countries except for Ireland and Malta.
Figure 4.2 shows the ratio of elective termination of pregnancy to 1,000 births for any type of
congenital malformation between 2003 and 2007, and the estimated number of elective
terminations of pregnancy per year in selected countries with reliable, standardised records.
1
The estimated number of elective terminations was calculated multiplying the total number of
births (most recent year available, EUROSTAT data) by the country-specific elective
termination of pregnancy to births ratio. Some of these ratios may be lower than in reality.
Figure 4.2. Elective termination of pregnancy (ETOP) to 1,000 births ratio for all congenital
malformations and estimated number of ETOP per year between 2003 and 2007 in selected
countries (Source: EUROCAT).
0
1
2
3
4
5
6
7
8
9
AT BE CZ DK FI FR DE NL ES SE UK NO CH
number of ETOP
ETOP/1000 births
Number
0 10,000 20,000 30,000 40,000 50,000 60,000 70,000
Heart defects
Hypospadias
Down syndrome
Cleft lip without cleft palate
Cleft palate
Limb deficiencies
Hydrocephalus
Spina bifida
Anorectal atresia/stenosis
Anencephaly
Diaphragmatic hernia
Oesophageal atresia/stenosis
Gastroschisis
Omphalocele
number of deliveries

63
Mortality
Data on infant mortality associated with congenital malformations are available for 28
countries (EU27 plus Norway). However, in a variable proportion of infant deaths the
presence of a congenital malformation is not always registered, especially as far as internal
malformations, such as heart defects, are concerned. Overall, the median rate of total infant
mortality in these 28 countries lies around 3.93 per 1,000 live births and the median
proportion of deaths associated with malformations is 27.8%. Figure 4.3 shows the values by
country.
5
Heart defects are the most common malformations associated with death, followed
by chromosomal and central nervous system anomalies. Heart defects contribute to
approximately 35-45% of all deaths associated with congenital malformations, with wide
variation across countries. It is lower in more, rather than in less developed countries.
Figure 4.3. Infant mortality rate per 1,000 live births (red line and left values) and proportion of
infant deaths due to congenital malformations (blue bars and right values).
0
5
10
15
20
25
30
35
40
45
50
Luxembourg
Slovenia
Sweden
Finland
Czech
Norway
Cyprus
Denmark
Italy
France
Austria
Germany
Netherlands
Spain
Ireland
Belgium
Portugal
Croatia
United
Estonia
Lithuania
Hungary
Poland
Slovakia
Malta
Latvia
Bulgaria
Romania
Rate per 1,000
0.0
2.0
4.0
6.0
8.0
10.0
12.0
% of deaths
% of deaths associated with CM rate per 1,000
There is only one recent study from Europe dealing with long-term mortality of children born
with a congenital malformation.
6
The study was conducted in Northern England and reports
the estimated mortality up to 15 years of age for the following conditions: diaphragmatic
hernia (42.9%), spina bifida (31.3%), hydrocephaly (30.2%), Down syndrome (16.6%),
omphalocele (12.8%), heart defects (9.7%), oesophageal atresia (6.7%), gastroschisis
(6.3%), cleft palate (3.7%), limb deficiencies (2.6%), cleft lip and palate (2.3%) and cleft lip
(0.7%). The study, however, is based on a cohort of children born between the years 1985
and 2003, and may show that mortality rates are higher than those of cohorts of children born
in more recent years. For example, in the Northern England study, the survival of one-year-
old infants with Down syndrome was 88.4% (85.7%-90.6%). Infants with Down syndrome
born between 1994 and 2004 in the Czech Republic,
7
Sweden,
8
Netherlands,
9
and the
United Kingdom Northern Health Region,
10
are reported to have a survival at one year of age
of around 95% (94.0%-97.7%).

64
Trends
It is difficult to provide reliable time trends because better diagnostic accuracy implies more
cases identified and spurious increases in prevalence, e.g. for congenital heart and renal
defects. The introduction of prenatal diagnosis and elective termination of pregnancy does
not allow valid comparisons since ascertainment is not performed with the same accuracy
across countries in subsequent years. Most congenital malformations, those not influenced
by better diagnosis and elective termination of pregnancy in recent years, show a stable
frequency in the last 10 to 30 years. A real and unexplained increasing trend has been
recorded for gastroschisis in some countries (Figure 4.4); similar trends have been observed
also outside Europe.
11
Italy and Spain seem to be an exception, an increasing trend is either
minimal or absent.
2,11
Figure 4.4. Time trend (3-year moving average) of gastroschisis per 1,000 births in five selected
countries with Birth Defects Surveillance Programmes.
0.00
1.00
2.00
3.00
4.00
5.00
6.00
7.00
1974
1975
1976
1977
1978
1979
1980
1981
1982
1983
1984
1985
1986
1987
1988
1989
1990
1991
1992
1993
1994
1995
1996
1997
1998
1999
2000
2001
2002
2003
2004
2005
2006
2007
Finland Norway Ireland Dublin
Germany SA France REMERA
It is hard to evaluate the expected decreasing time trend of neural tube defects
(anencephaly, spina bifida) associated with a better folate intake through improved nutrition,
fortified foods and folic acid supplements. Some studies have shown that the
recommendation to increase the use of folic acid supplements in the 1990s has not produced
a significant decrease of anencephaly and spina bifida in Europe.
12,13
However, a decreasing
trend is seen in countries with a high prevalence in the 1970s and 1980s (Figures 4.5 and
4.6). Regarding anencephaly, the decrease followed by an increase observed in the late
1980s in Hungary and England and Wales may be due to the elective termination of
pregnancy effect.

65
Figure 4.5. Time trend (3-year moving average) of anencephaly per 1,000 births in three
countries with Birth Defects Surveillance Programmes.
Figure 4.6. Time trend (3-year moving average) of spina bifida per 1,000 births in three
countries with Birth Defects Surveillance Programmes.
A real increasing trend of the total prevalence of Down syndrome has been recorded in many
countries and is associated with the increased proportion of deliveries after 30-35 years of
age.
14,15
However, this has been counterbalanced by elective termination of pregnancy after
prenatal diagnosis. The final result on birth prevalence is shown in Figure 4.7. In Dublin,
Ireland, the prevalence is higher than in the other four sites, and the time trend is increasing,
because elective termination of pregnancy is not allowed, while maternal age is increasing.
In Norway, the prevalence is higher than in the other four countries because prenatal
diagnosis and/or elective termination of pregnancy are performed less often.
0.0
2.0
4.0
6.0
8.0
10.0
12.0
14.0
16.0
18.0
20.0
1974
1975
1976
1977
1978
1979
1980
1981
1982
1983
1984
1985
1986
1987
1988
1989
1990
1991
1992
1993
1994
1995
1996
1997
1998
1999
2000
2001
2002
2003
2004
2005
2006
Engl and & Wal es Ireland Dublin Hungary
0.0
2.0
4.0
6.0
8.0
10.0
12.0
14.0
16.0
18.0
20.0
1974
1975
1976
1977
1978
1979
1980
1981
1982
1983
1984
1985
1986
1987
1988
1989
1990
1991
1992
1993
1994
1995
1996
1997
1998
1999
2000
2001
2002
2003
2004
2005
2006
Engl and & Wal es Ireland Dublin Hungary

66
Figure 4.7. Time trend (3-year moving average) of Down syndrome prevalence per 1,000 births
among live births in five selected countries with Birth Defects Surveillance Programmes.
0.0
5.0
10.0
15.0
20.0
25.0
1974
1975
1976
1977
1978
1979
1980
1981
1982
1983
1984
1985
1986
1987
1988
1989
1990
1991
1992
1993
1994
1995
1996
1997
1998
1999
2000
2001
2002
2003
2004
2005
2006
Norway Ireland Dublin
Czech Republic France Paris
France REMERA Italy Emilia Romagna
Causes and Risk Factors
A number of causes and risk factors associated with congenital malformations has been
established or estimated. Some of them are not modifiable (e.g. genetic anomalies in
parents), others cannot be easily modified by public health and health care interventions (e.g.
maternal age at delivery or consanguinity); complex intersectoral interventions are needed.
Table 4.2 lists some of the established causes and risk factors that are modifiable with public
health and health care interventions: rare and unconfirmed causes and risk factors are not
listed. As many congenital malformations have several causes, the final result of preventive
intervention is often a reduction of their prevalence, not their elimination. This is an important
point for the distribution of correct information to the public and to patients.
Table 4.2. Well-established, not uncommon and modifiable causes and risk factors for
congenital malformations
Infections cytomegalovirus, rubella, syphilis,
toxoplasmosis, varicella
Medications ACE-inhibitors, androgenic hormones, anti-
epileptics, high doses of vitamin A, lithium,
medications to treat cancer, paroxetine, retinoic
acid, thalidomide
Maternal diseases at conception or in
early pregnancy
diabetes, high fever, phenylketonuria
Life style habits cocaine use, folate inadequacy for
reproduction, obesity and overweight, poor
nutrition, smoking
Many congenital malformations are due to similar causes and risk factors acting before
conception and influencing the prevalence of other adverse reproductive outcomes as, for
example, preterm and small-for-gestational-age births, and developmental disabilities. This
means that the control of a risk factor may bring about multiple positive outcomes. The
classical example is smoking, a risk factor for many adverse reproductive outcomes.

67
Challenges
Prevention of congenital malformation is based on:
16
• Pre-conception genetic counselling, to avoid pregnancies in couples with a high risk of
a genetically determined malformation.
17
• Interventions to reduce the number of new cases through effective control of known
causes and risk factors (primary prevention). This would include a reduction of the
number of elective terminations of pregnancy.
• Early recognition of a disease in its pre-symptomatic period, followed by effective
treatment, to avoid clinical manifestation of the disease (secondary prevention).
The following actions will help reduce the risk of some specific malformations and/or other
birth defects, or adverse reproductive outcomes:
1. A healthy life style (e.g. good nutrition and physical activity, restriction of alcohol and
smoking, safe sex) to prevent neural tube defects (anencephaly, spina bifida), cleft lip
and/or palate, and possibly other malformations. A healthy life style will also help
prevent preterm and small-for-gestational-age births and developmental disabilities.
18,19
2. Frequent checks for chronic diseases, and in particular maternal diabetes, followed by
adequate treatment, to prevent heart defects and other malformations. Women treated
with antiepileptics should reassess the need for treatment at least every two years and
use the most appropriate therapeutic regimen when they become pregnant.
20
3. Plan pregnancies and immunise against rubella and varicella as early as possible when
entering the fertile age in order to prevent congenital rubella and varicella syndromes.
21
4. During pregnancy, avoid those medications established as teratogens (e.g.
thalidomide, retinoic acid, valproic acid).
22
They can cause many adverse reproductive
outcomes, such as miscarriages, preterm births and developmental disabilities.
5. Intake correct amounts of folic acid. With adequate nutrition, a daily dose of 0.4 mg of
folic acid, at any age when fertile and especially when a pregnancy is not correctly or
efficiently avoided, will reduce the risk of neural tube defects (anencephaly and spina
bifida) by 50%. It may also prevent other malformations (e.g. heart defects). Higher
doses (4-5 mg/day) are recommended for women at higher risk of having a child with
congenital malformations.
23,24
6. Check immune status against toxoplasmosis and cytomegalovirus at any age when
fertile, and especially when a pregnancy is not efficiently avoided, followed by careful
avoidance, if needed, of dangerous contacts with food or people carrying these
infections, so as to help prevent hydrocephalus, deafness and ocular anomalies.
7. Immunise against influenza when pregnancy is planned so as to prevent high fever
during the first weeks of pregnancy and therefore reduce the risk of having a child
affected by anencephaly, spina bifida and other malformations.
8. Avoid contact with pesticides and organic solvents when a pregnancy is planned, in
order to prevent limb deficiencies, oral clefts and defects of the central nervous
system.
25
The most urgent challenge for governments and health systems is to promote these actions
and clinical interventions within maternal and child health services in all countries and in all
population groups, using an equity approach. The first prenatal visit, which takes place
usually between the 7
th
and 10
th
week of gestation, is too late to implement many of the
above interventions. As the development of the child starts with conception, these actions are
particularly important before pregnancy. Pre-conceptional and inter-conceptional care should
therefore be strongly encouraged.
26

68
References
1. Eurocat. European Surveillance of Congenital Anomalies. http://www.eurocat-network.eu/
accessed 10 October 2010.
2. International Clearinghouse for Birth Defects Surveillance and Research. http://www.icbdsr.org/
accessed 10 October 2010.
3. Leoncini E, Botto LD, Cocchi G, et al. How valid are the rates of Down syndrome
internationally? Findings from the International Clearinghouse for Birth Defects Surveillance and
Research. Am J Med Genet A 2010;152A:1670-80.
4. Mason CA, Kirby RS, Sever LE, et al. Prevalence is the preferred measure of frequency of birth
defects. Birth Defects Res A Clin Mol Teratol 2005;73:690-2.
5. WHO/EURO. European detailed mortality database (http://data.euro.who.int/dmdb/)
6. Tennant PW, Pearce MS, Bythell M, et al. 20-year survival of children born with congenital
anomalies: a population-based study. Lancet 2010;375:649-56.
7. Sípek A, Gregor V, Horácek J, et al. [Survival of children born with selected types of birth
defects in Czech Republic]. Ceska Gynekol 2004;69 Suppl1:47-52 (in Czech).
8. Frid C, Drott P, Otterblad Olausson P, et al. Maternal and neonatal factors and mortality in
children with Down syndrome born in 1973-1980 and 1995-1998. Acta Paediatr 2004;93:106-12.
9. Weijerman ME, van Furth AM, Vonk Noordegraaf A, et al. Prevalence, neonatal characteristics,
and first-year mortality of Down syndrome: a national study. J Pediatr 2008;152:15-9.
10. Irving C, Basu A, Richmond S, et al. Twenty-year trends in prevalence and survival of Down
syndrome. Eur J Hum Genet 2008;16:1336-40.
11. Castilla EE, Mastroiacovo P, Orioli IM. Gastroschisis: international epidemiology and public
health perspectives. Am J Med Genet C Semin Med Genet 2008;148C:162-79.
12. Botto LD, Lisi A, Robert-Gnansia E, et al. International retrospective cohort study of neural tube
defects in relation to folic acid recommendations: are the recommendations working? BMJ
2005;330:571.
13. Busby A, Abramsky L, Dolk H, et al. Preventing neural tube defects in Europe: a missed
opportunity. Reprod Toxicol 2005;20:393-402 (Erratum in: Reprod Toxicol 2006;21:116).
14. Cocchi G, Gualdi S, Bower C, et al. International trends of Down syndrome 1993-2004: births in
relation to maternal age and terminations of pregnancies. Birth Defects Res A Clin Mol Teratol
2010;88:474-9.
15. Dolk H, Loane M, Garne E, et al. Trends and geographic inequalities in the prevalence of Down
syndrome in Europe, 1980-1999. Rev Epidemiol Sante Publique 2005;53 Spec No 2:2S87-95.
16. Jack BW, Atrash H, Coonrod DV, et al: The clinical content of preconception care: an overview
and preparation of this supplement. Am J Obstet Gynecol 2008;199:S266-79.
17. Solomon BD, Jack BW, Feero WG. The clinical content of preconception care: genetics and
genomics. Am J Obstet Gynecol 2008;199 (6 Suppl 2):S340-4.
18. Gardiner PM, Nelson L, Shellhaas CS, et al. The clinical content of preconception care: nutrition
and dietary supplements. Am J Obstet Gynecol 2008;199 (6 Suppl 2):S345-56.
19. Floyd RL, Jack BW, Cefalo R, et al. The clinical content of preconception care: alcohol, tobacco,
and illicit drug exposures. Am J Obstet Gynecol 2008;199 (6 Suppl 2):S333-9.
20. Dunlop AL, Jack BW, Bottalico JN, et al. The clinical content of preconception care: women with
chronic medical conditions. Am J Obstet Gynecol 2008;199 (6 Suppl 2):S310-27.
21. Coonrod DV, Jack BW, Boggess KA, et al. The clinical content of preconception care:
immunizations as part of preconception care. Am J Obstet Gynecol 2008;199(6 Suppl2):S290-5.
22. Dunlop AL, Gardiner PM, Shellhaas CS, et al. The clinical content of preconception care: the
use of medications and supplements among women of reproductive age. Am J Obstet Gynecol
2008;199(6 Suppl2):S367-72.
23. Wolff T, Witkop CT, Miller T, et al. Folic acid supplementation for the prevention of neural tube
defects: an update of the evidence for the U.S. Preventive Services Task Force. Ann Intern Med
2009;150:632-9.
24. Wilson RD, Johnson JA, Wyatt P, et al. Pre-conceptional vitamin/folic acid supplementation
2007: the use of folic acid in combination with a multivitamin supplement for the prevention of
neural tube defects and other congenital anomalies. J Obstet Gynaecol Can 2007;29:1003-26.
25. McDiarmid MA, Gardiner PM, Jack BW. The clinical content of preconception care:
environmental exposures. Am J Obstet Gynecol 2008;199(6 Suppl 2):S357-61.
26. Reeve ME. Preconception health: the missing link in the MNCH continuum of care. Beijing Da
Xue Xue Bao 2009;41:383-8.

69
5. Neurological and Developmental Disorders
Neurological and developmental disorders are a very heterogeneous group of conditions
including common problems, such as headaches and learning disabilities, as well as serious
disabilities, such as cerebral palsy. This chapter deals only with conditions of public health
importance in terms of prevalence and/or severity. They are listed and defined in Table 5.1.
Table 5.1. Definitions of some neurological and developmental disorders
CONDITION DEFINITION
Cerebral palsy A group of permanent disorders of the development of
movement and posture (often accompanied by disturbances
of sensation, perception, cognition, communication and
behaviour, and by secondary musculoskeletal problems),
causing activity limitations.
Mental retardation Disability characterised by significant limitations in intellectual
functioning and adaptive behaviour, as expressed in
conceptual, social, and practical adaptive skills, evident
before the age of 18 years.
Movement disorders:
hyperkinetic (common) and
hypokinetic (uncommon)
movements
Hyperkinetic movement disorders (sometimes referred to as
dyskinesias) are abnormal, repetitive, involuntary movements
including tics, chorea, dystonia and stereotypies.
Epilepsy Heterogeneous group of neurological conditions and
syndromes characterised by recurrent and unprovoked
seizures. Infantile spasms, Lennox-Gastaut syndrome and
absence seizures are unique to children.
Learning disabilities
(learning disorders,
learning difficulties)
These include reading, writing and math disorders, and non-
verbal learning disabilities. The most common types are
dyslexia, dyscalculia (or math disability) dysgraphia (a
deficiency in the ability to write), dyspaxia, auditory
processing disorder and visual processing disorder.
Headaches (among the
most common disorders of
the nervous system)
The most common primary headache disorders are migraine,
tension-type headache, cluster headache, and the so-called
chronic daily headache syndrome. Headache can also occur
as a symptom of a large number of other conditions.
Key Messages
• Neurological and developmental disorders are a very heterogeneous group of
conditions including common problems, such as headache and learning disabilities,
and serious disabilities, such as cerebral palsy. All together, a large proportion of
children suffer from one or more of these conditions.
• The overall prevalence of some of these conditions may be increasing due to higher
chances of survival of very LBW infants and of children suffering from rare diseases
affecting also the nervous system.
• The WHO International Classification of Functioning, Disability and Health (ICF)
represents a milestone in modern thinking about assessment and treatment for
children with disability, but its implementation is still not homogeneous.
• There are important differences and difficulties in adopting uniform international
classifications and definitions and this hinders adequate recognition and care.
• Although there are countries that have developed some of the most advanced
models of care for children with complex disabilities, there are still striking
differences across countries and important gaps in the capacity to provide optimal,
comprehensive and multidisciplinary care to children affected by neurological and
developmental disorders.

70
The differentiation between neurological and developmental conditions and mental health
disorders (see Chapter 6) is somewhat arbitrary, being based on the fact that the former
have a clearer biological basis than the latter, which on the contrary have a strong
environmental and social component. However, this distinction, which is still adopted by
international classifications, is not totally in agreement with the most recent advances in
neurobiology and neuroscience, which show that most mental health disorders have some
recognizable neurobiological basis. Furthermore, comorbidity between the two groups of
conditions is common.
Main Sources of Information
For cerebral palsy the main source of information is the Surveillance of Cerebral Palsy in the
Europe database, which includes 24 registers in 13 countries. For learning disabilities the
main source are OECD documents. Headaches are dealt with by the Eurolight project
(http://www.eurolight-online.eu/). Biomedical and social science databases have been
searched to look for data on movement disorders, mental retardation and epilepsy.
As far as completeness and quality of data are concerned, there are several difficulties:
1. For certain conditions, no common definition is available, and there are differences in
classification and assessment, particularly for learning disabilities.
2. Country data are often drawn from studies carried out on non-representative samples
of the population.
3. Some types of disorders might be difficult to diagnose, such as learning disabilities and
movements disorders, and as a result prevalence is higher in countries where
diagnostic capacity is more advanced.
Size of the Problem
Cerebral palsy is the most common disability of children in Western Europe, with a
prevalence of about 2 cases per 1,000 live births.
1
The incidence is higher in boys than in
girls. The Surveillance of Cerebral Palsy in Europe project reports a M:F ratio of 1.33:1.
2
In
2006, a Dutch study based on review of studies from 1965 to 2004 reported that in the last
40 years the prevalence of cerebral palsy had risen to well above 2 per 1,000 live births.
3
Another extensive review showed that the prevalence of cerebral palsy in the past 40 years
was stable, that a modest increase in prevalence probably occurred in the last decades of
the 20
th
century due to the increased survival rate of very LBW infants, and that this recent
increase may have levelled itself off.
4
For mental retardation the data present several uncertainties. The prevalence in children
between 0 and 14 years old is generally estimated at 1%, although in groups defined only by
their Intelligence Quotient it ranges from 2% to 3%. Mental retardation is more common in
boys than in girls with a 1.4:1 ratio.
5
Individual countries report rates from 0.3% to 2.5% in
school-aged children depending on the criteria used to determine eligibility for special
educational services, the labels assigned (i.e. developmental delay, learning disability,
autism, and/or mental retardation), and the environmental and economic conditions within
the country.
6
Movement disorders include a wide variety of disorders. For Tourette syndrome differences
in study methods yield a range in prevalence estimates between 1 and 3 cases per 1,000
children.
7
In general, higher rates have been found in younger age groups, substantiating the
idea that many cases are partially or completely resolved by adulthood. Tourette syndrome is
more common in boys than in girls.
8
Chronic tic disorders are more common than Tourette
syndrome, occurring in 2% to 5% of school-aged children.
9
Sydenham’s chorea patients
represented 5.6 per 1,000 hospitalised children in a retrospective French study regarding
children seen between 1987 and 1997, with an average age of 10.5 years.
10

71
The true prevalence of dystonias in children and the relative frequency of primary versus
secondary forms are unknown.
11
Stereotypies, such as self-harming behaviour and head-banging, are believed to occur 3
times more frequently in boys than in girls. Self-biting may be more prevalent in girls than in
boys.
12
Moderately or severely distressing restless legs syndrome symptoms are reported to occur
two or more times per week in 0.5% of children. There are no significant gender
differences.
13
The prevalence of developmental coordination disorders is around 5% of the school
population, with a ratio of boys to girls of 3:1.
14
Epilepsy: the estimated number of children and adolescents in Europe with active epilepsy
is that of 0.9 million (prevalence 4.5–5.0 per 1,000) based on the prevalence of epilepsy in
different studies and when accounting for incomplete case identification. The estimated
number of new cases per year among European children and adolescents is 130,000
(incidence rate 70 per 100,000). The proportion of new and established cases with epilepsy
in individual countries may differ substantially from the total European distribution.
15
Learning disabilities: it is estimated that 5% to 10% of school-aged children struggle with
reading, writing, or mathematics. The majority of these children have difficulties with
language skills, reading, and spelling, dyslexia being the most common of all learning
disabilities (80%). According to different studies, the prevalence of dyslexia ranges between
5% and 17.5% and is strongly dependent on the characteristics of the mother tongue, being
more frequent in Anglo-Saxon languages than in Romance ones. A smaller number of
children with this condition struggle with problem solving, arrhythmic and visual-spatial
problems, and with motor and tactile-perceptual problems. The prevalence of dyscalculia is
estimated at around 5%.
16
Figure 5.1 shows the estimated percentage of children who need
special education by country. The wide differences across countries may be due to
differences in criteria and definitions rather than in prevalence.
Headaches are common in childhood and the prevalence increases further during teenage
years. Epidemiological studies have shown that 15-20% of school-aged children complain of
headache and 3-5% of these of actual migraine headaches.
17
Studies have reported annual
prevalence rates in children between 3% and 11% for migraine, and between 10% and 24%
for tension-type headache. The prevalence of self-reported headache is higher.
18
Migraine is
seen in 5% of children aged 7-10 years and in 17% of adolescents. There is an equal
prevalence in girls and boys prior to puberty. After puberty, however, the prevalence is 2-3
times higher in girls.
17
The prevalence of headache, tension-type headache and migraine in
school children of given countries is shown in Figure 5.2.
19
The data, however, are not
accurate enough to provide a cross-country comparison; classification, data collection and
age grouping are somewhat heterogeneous. The need for standardised and uniformed
practices of data collection in this area is fundamental for a reliable and complete analysis of
differences and trends.

72
Figure 5.1. Percentage of children who need special education over all compulsory school
aged children; data provided by countries. Source: European agency for development in
special needs education. Academic year of reference 2006/7 or 2007/8.
0 2 4 6 8 101214161820
AT
BE (Flemish)
BE (French)
BG
CY
CZ
DK
EE
FI
FR
DE
EL
HU
IE
IT
LV
LT
LU
MT
NL
PL
PT
SI
ES
SE
UK (England)
UK (Scotland)
UK (Wales)
IS
NO
CH
%
Figure 5.2. Prevalence of headache, tension-type headache and migraine in school children in
some countries in different years and age groups* (Source: Stovner, 2010).
0
10
20
30
40
50
60
70
80
90
DE EL FI IT NO SE UK TR
%
Headache Tension-type headache Migraine
* FI: headache/migraine (1994, 8-9 y), tension-type headache (2002, 12 y); DE: headache (2004, 10-
18 y), tension-type headache (2007, 12-15 y), migraine (2009, 9-14 y); EL: (1999, 4-15 y); IT: (1995,
11-14 y); SE: (2004, 7-15 y); UK: (1994, 5-15 y); NO: (2004, 13-19 y); TR: headache/migraine (2007,
9-17 y), tension-type headache (2005, 8-16 y).

73
Health Implications and Quality of Life
Cerebral palsy affects gross motor function to a varying extent. A child's resulting overall
development, specifically in mobility and different aspects of development and learning, is
compromised by relative deprivation of experience. Children with cerebral palsy are
considerably more likely to have functional difficulties unrelated to movement but related to
their central nervous system. These include sensory, epileptic, learning, behavioural, and
related developmental impairments.
20
These impairments may begin early in life as
difficulties in feeding, irritability, and disordered sleep. These problems, when present, affect
day-to-day life and can cause considerable distress to children, parents, and carers. These
problems are not inevitable or intractable, but it is essential to identify them and interfere
before they become entrenched.
Insofar as behavioural and psychiatric problems such as autism, hyperactivity, and self-
injurious behaviours are concerned, children with mental retardation are at higher risk than
those who are part of the general population
All movement disorders have the potential to produce social stigma and distress depending
on the environment in which they occur. Although the range of physical consequences varies
greatly, serious medical complications are rare. For example, some stereotypies may not
directly cause observable physical damage to a child. Instead, they may result in impairment
in social functioning. The resulting stigma can bring about considerable distress, humiliation,
social rejection, academic problems, feelings of shame and guilt, discomfort in social
activities, and depression or anxiety.
12
In most cases, epilepsy can be treated effectively. It is important to follow the process of
patient identification, diagnostic evaluation, choice of treatment, treatment and re-evaluation
as needed. The most common treatment is medication. Nevertheless, the impact of epilepsy
on a child, his family and, indirectly, on the community can be significant. Raising awareness
in the family and in the community is important, as epilepsy is often still associated with
stigma. When seizures are controlled, a social burden of epilepsy could still exist due to:
• Physical hazards due to the unpredictability of the seizures.
• Social exclusion because of the negative attitudes of others towards children with this
condition.
• Stigma, as children with epilepsy may be banned from school and are more likely to
become victims of bullying.
21, 22
Many children with epilepsy do not have special educational needs, and may never
experience seizures at school. About two thirds of them may underachieve academically,
and a minority will experience seizures during school time. The educational needs of young
people with epilepsy can be met by working together with education professionals, so that
they can feel safe at school.
The failure to succeed academically in children who have learning disabilities depends
more on the quality of age-appropriate teaching and learning experiences, than on the
cognitive deficits or socio-cultural factors. Dyslexia shows high comorbidity with other
developmental problems, including impairments in language, motor skills, and behavioural
control.
23
Reading disability is also a contributor to juvenile delinquency and leads to higher
rates of recidivism.
24
The presence of dyscalculia should prompt physicians to look for
medical and psychiatric syndromes, given that mathematic disorders are present at higher
than average rates in conditions such as epilepsy and Fragile X syndrome.
25
At the early
stages of schooling, academic or learning difficulties can show through low marks, delay in
completing assignments, attention deficits, delay in learning new skills, and difficulties in
general understanding of tasks given or reading.
16
Children with this condition may also be
shy and withdrawn, and may have behavioural problems at school. Differential diagnosis
should include ADHD, sensory impairments, developmental coordination disorder, and
mental retardation or borderline intellectual disability. It is important to recognise that learning
disabilities are not cured, and various deficits persist throughout life. When compared to

74
those with typical reading ability, adolescents with poor reading skills have higher rates of
overall impairment, poor role functioning, poor behaviour when relating to others, swinging
moods, self-harm and disturbed thinking.
26
The continuation of reading difficulties into
adulthood does not necessarily lead to poor educational achievement, yet it may increase
the risk of psychiatric disorders.
27
Adolescents with learning disabilities have increased rates
(up to 40%) of dropping out of school; they also show low self-esteem, and lack of social
skills.
28
Headaches have a negative effect on quality of life. Some studies report a significant
decrease in the number of school attendance days due to headache, and a significant impact
on the performance and success in school as a consequence.
17
Childhood headaches are
especially complicated for three reasons: a) the parents’ fear, communicated to the child, that
a serious medical pathology may underlie the pain; b) the lack of evidence-based
pharmacological treatment, and c) the belief that these headaches are largely
psychological.
29
Causes and Risk Factors
Several studies report that risk factors associated with cerebral palsy are grouped into
prenatal, perinatal, and postnatal. Prenatal risk factors include prematurity, LBW, maternal
epilepsy, hyperthyroidism, infections, bleeding in the third trimester, incompetent cervix,
severe toxaemia, eclampsia, drug abuse, trauma, multiple pregnancies, and placental
insufficiency. Out of these, prematurity and LBW are the two most important risk factors in
developed countries with high standards of obstetric care. Perinatal risk factors are
prolonged and difficult labour, premature rupture of membranes, presentation anomalies,
vaginal bleeding at the time of admission to labour, bradycardia (slow heart rate) and
hypoxia. Postnatal risk factors, up to 2 years after birth, are encephalitis, meningitis, hypoxia,
seizures, coagulopathies (clotting or bleeding disorders), neonatal hyperbilirubinemia
(jaundice in newborns), and head trauma.
A wide variety of medical and environmental conditions can cause mental retardation.
Some are genetic (e.g. chromosome abnormalities), others occur during pregnancy (e.g.
severe maternal malnutrition), during birth (e.g. asphyxia), or after birth (e.g. brain infections
such as meningitis and encephalitis). More specifically, the three major known causes of
mental retardation are Down syndrome, foetal alcohol syndrome and Fragile X syndrome.
For some of the affected people the cause remains unknown. Poverty, associated with
malnutrition, exposure to environmental health hazards and inadequate health care, and
cultural deprivation increase the risk of mental retardation in children.
There are many causes of childhood movement disorders. Cerebrovascular accidents,
collagen vascular diseases, drug intoxication, hyperthyroidism, Wilson's disease, Huntington
disease, and infectious agents are all well-known causes of chorea. In addition, various
medications can induce movement disorders. The increased use of stimulants, antipsychotic
agents, and antidepressant drugs in children by primary care physicians, psychiatrists, and
neurologists has inevitably led to an higher number of paediatric patients manifesting the
side effects of these drugs, including movement disorders.
30
Factors increasing the risk of epilepsy in children include: congenital malformations of the
central nervous system, moderate or severe head trauma, central nervous system infections,
certain inherited metabolic conditions, febrile seizures, genetic factors and ADHD. However,
these account for only 25% to 45% of cases, and thus the cause of most cases remains
unclear.
31
Although epilepsy is defined as a condition characterised by recurrent, unprovoked
seizures, it has long been recognised that even if most seizures appear to occur
spontaneously, they may be provoked, or their occurrence may be altered, by a variety of
endogenous and environmental phenomena (such as emotional stress, sleep deprivation
and loud noise).

75
The precise causes of learning disabilities very often remain unknown. The known causes
(often indirect) include genetic and nutritional factors, infections, toxic exposures, trauma,
perinatal factors and multifactorial conditions.
For headaches, when there are no organic causes, there may be many other factors
involved. In chronic daily headaches, stress may be a primary factor in the genesis of
headache or in perpetuating it. Family and school relationships, relationships with friends,
bullying, substance abuse, and participation in extracurricular activities are areas that would
need to be checked.
32
In children and adolescents, migraine headaches may be precipitated
by psychological factors. They may also be exacerbated by psychological or environmental
stressors, and may adversely impact the quality of life of the child and the family.
29
Psycho-
social stressors at home or at school, and disruptions in the daily schedule such as missing
meals, having inadequate or excessive sleep, are well-known triggers of headaches. Parents
and children with migraines may notice behavioural and emotional changes that occur in
relation to migraine attacks.
29
Challenges
A first challenge is to extend the use of the WHO International Classification of Functioning,
Disability and Health (ICF).
33
ICF represents a milestone in modern thinking about
assessment and treatment for children with disability, but its implementation is still partial and
not homogeneous. Moreover, in order to make comparisons among countries and draw a
meaningful analysis of trends, common definitions are needed for certain conditions, in
particular for learning disabilities.
Another challenge is to reduce the gaps among countries in their capacity to provide optimal
comprehensive and multidisciplinary care to children affected by neurological and
developmental disorders. For example, there are countries in which children affected by
severe neurological conditions are institutionalised.
34
Children with neurological impairments
should be offered inclusive education in public schools, receive specific support, as opposed
to being sent to special educational institutions.
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77
6. Mental Health
Mental health is the state in which an individual is able to achieve and maintain optimal
psychological functioning and well-being. Child and adolescent mental health is based on the
development of a sense of identity and self-worth, and it is nurtured by sound family and peer
relationships.
A mental health disorder is diagnosed under an accepted system of classification
e
through
the identification of a pattern of signs and symptoms that ultimately cause an impairment of
psychological and social functioning, and which meets criteria for disorder. A proportion of
children and adolescents suffer from overt mental health disorders. However, another
proportion of children suffer from mental health and behavioural problems that do not fit into
specific categories but lead, nonetheless, to sub-optimal well being.
Mental health, as opposed to mental illness, implies the ability to learn and to be productive.
Mental health could be defined as the capacity to take advantage of growth stages and
cultural resources to maximise development. Some projects, e.g. Kidscreen, have made an
attempt to measure positive mental health; however this has not been applied on a wider
scale yet.
This chapter will focus on the main mental health disorders and associated impairment in
childhood. In addition, it will deal with behavioural patterns that increase the risk of mental
health problems (for instance, bullying and the use of videogames).
Main Sources of Information
Comparable data on mental disorders are not currently available in Europe due to the lack of
a standard system of data collection. Some countries are greatly improving their national
data collection, and have been able to define and describe the mental health situation of their
child population. Although there is evidence to show that prevalence and incidence of mental
disorders are different between countries, the available information from individual countries
is useful to understand associations between mental disorders and risk factors.
e
For certain disorders some authors use one of the version of DSM system while others use different
classification e.g. versions of the ICD system, or clinical tools such as SCAN, SCID,CIDI, PSE-GHQ,
SCL-90. The use of different systems has a bearing on estimates of prevalence.
Key Messages
• It is estimated that up to 20% of children in Europe may have a mental or
behavioural problem that may range from a minor complaint to a severe disorder,
with large variations in prevalence estimates across countries.
• There is no consensus regarding whether or not mental health disorders have
increased over the past decades. It is therefore not clear whether mental health
disorders are showing changes over time. The great increase in autism spectrum
disorders is mainly due to the adoption of broader definitions.
• Several biological, psychological and social risk factors are associated with mental
health and the development of mental disorders from early childhood to
adolescence. Many mental health disorders in adults have their origin in childhood.
• There is increasing awareness of the importance of improving preventive action and
access to mental health services for children. Over the past few years several
countries have made progress on this. However, many children with mental health
problems are not receiving the care they need and community-based prevention
programmes are lacking.
• Population-based prevalence studies on mental health disorders in children across
Europe, using standard methods and definitions, are needed.

78
The Kidscreen project (http://www.kidscreen.org/cms/thekidscreenproject) has gathered data
in 13 countries (Austria, Czech Republic, France, Germany, Greece, Hungary, Ireland,
Poland, Spain, Sweden, Switzerland, Netherlands, United Kingdom) in an attempt to provide
an overall picture of positive mental health by assessing the well-being and subjective health
in a sample of children and adolescents 8 to 18 years of age. Some data on prevalence of
mental health problems are available from the 16 countries (Austria, Belgium, Bulgaria,
Estonia, Finland, Germany, Greece, Hungary, Latvia, Lithuania, Norway, Poland, Romania,
Slovenia, Spain, United Kingdom) that participate in the Child and Adolescent Mental Health
in enlarged EU (CAMHEE) project (http://www.camhee.eu/about_project/), which mainly
provides an overview of the situation of child mental health infrastructures, policies and
programmes.
Size of the Problem
Mental disorders in children include anxiety disorders, depression, conduct and eating
disorders, attention deficit hyperactivity disorder (ADHD), psychotic disorders (such as
schizophrenia) and autism spectrum disorders. These can disrupt daily life at home, at
school or in the community. Without adequate support, mental health problems in children
can lead to school failure, family discord and violence, and later on to substance abuse and
even suicide.
Mental health disorders have an alarming prevalence among children and adolescents in
Europe. It is estimated that the overall prevalence of mental disorders in childhood and
adolescence lies between 10% and 20% worldwide.
1-3
However, it can be higher in
underprivileged and poorly integrated population subgroups, such as migrants. There is no
consensus regarding whether or not mental health disorders have increased over the past
decades. It is therefore not clear whether mental health disorders are showing changes over
time.
4
In general, girls tend to suffer more than boys from internalizing disorders (e.g. depression,
anxiety, obsessive-compulsive disorders, somatic disorders). They also have a tendency to
deal with problems internally rather than act them out in the environment through
externalising disorders (e.g. conduct disorders), as boys more frequently do. Besides a clear
gender pattern, mental disorders have some typical age ranges of presentation (Table 6.1).
1
Table 6.1. Typical age ranges (years) for presentation of selected disorders (Source: adapted
from WHO, 2005)
Disorder 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16
ASD x x x x x x
Conduct
disorders
x x x x x x x x x x x x x x
Anxiety
disorders
x x x x x x x x x x x
Psychotic
disorders
x x x
Substance
abuse
x x x x x x
It has been found that one in five children diagnosed with a disorder actually suffered from
more than one, the most common combinations being conduct and emotional disorders, and
conduct and attention deficit disorders. The majority of children (72%) with multiple disorders
were boys, reflecting the high proportion of children with conduct disorders in this group.
Children suffering from more than one disorder were at a greater risk of encountering

79
additional difficulties; for instance, 63% of those with multiple disorders showed impaired
intellectual development, compared to 49% of those with a single disorder. Children with
multiple disorders accounted for approximately one third of those using mental health
services.
1
Anxiety is a common psychological disorder in childhood and adolescence, perhaps the
most common, even according to the most conservative studies. In the United Kingdom, one
child in an average primary school class of 30 children has an anxiety disorder.
5
Anxiety
disorders include generalised anxiety disorder, panic disorder, phobias, obsessive-
compulsive disorder, post-traumatic stress disorder and separation anxiety. The most
common of these in children under 12 years of age appears to be Separation Anxiety
Disorder.
6
Some evidence suggests that this is not always a transitory disorder.
7
The
reported prevalence of any anxiety disorder in children under 12 years of age varies between
studies. One of the most quoted estimates ranges between 4% and 5%.
6
Prevalence
increases if adolescents are included.
2
There are anyway problems in interpreting the results
of studies. The first concern is that the DSMIII-R classification (see glossary) used in many
studies may have been over-inclusive since it did not require a child to be experiencing
distress or impairment as a result of his/her symptoms. On the other hand, there are children
that experience substantial levels of impairment yet do not meet criteria for a formal
diagnosis.
There are few data on depression and depressive disorders in children in Europe. The
reported prevalence ranges between 1% and 6%, if adolescents are included, with a higher
prevalence in girls.
2
Symptoms of depression change with age and range from sleep
disturbances and changes in appetite to irritability, aggression and excessive crying. Children
tend to deny symptoms of depression; this partly explains the difficulties in estimating true
prevalence. Depression in children is often associated with co-morbid conduct disorders.
8
Major forms of depression may lead to suicide; however, this is very rare in children under 12
years of age and there are no estimates of its incidence in Europe. In Germany, suicidal
behaviour and suicide ideation was reported by about 3% of children 11 to 17 years of age,
with higher rates in girls than in boys; however, only half of the parents of these children
reported the behaviour.
9
Conduct disorders are probably the most common reason for referral of young children to
mental health services and are more prevalent among boys.
10
The term is generally used to
describe a pattern of repeated and persistent misconduct. The primary behaviours that fall
into this category are aggression, non-compliance, defiance, and aversive interpersonal
behaviour. The DSM-IV categorises children with the less severe form of disruptive
behaviour disorders as having Oppositional Defiant Disorder, the symptoms of which include:
a pattern of negativistic, defiant, noncompliant, and argumentative behaviour, which can last
for at least 6 months and can cause significant impairment in social or academic functioning.
2
As for other mental disorders, there is a wide variation across countries and data are not
comparable. In the UK, the prevalence is 6.5% for boys and 2.7% for girls in children
between 5 and 10 years of age.
10
Epidemiological studies suggest that approximately half of
those who meet diagnostic mental health criteria for conduct disorder, also meet criteria for
at least one other disorder: the most frequent combination is with ADHD.
ADHD is a chronic disorder with lifelong impact on personal and social functioning as well as
on academic performance. It also has a significant impact on the health system since it
requires long- term treatment. It is defined as a developmentally inappropriate level of
inattention and/or hyperactivity-impulsivity that is present before the age of seven. A
literature review reports highly-variable rates of AHDH world wide; prevalence rates in
Europe are slightly lower than those in North America (about 4% vs. 7%).
11
Differences in
methods are significantly associated with differences in prevalence across countries. In
Europe prevalence rates vary between 1.7% in Norway and 10.7% in Poland, with
intermediate values in the United Kingdom (2.5%), Germany (4.6%) and Romania (4.9%).
2
ADHD tends to affect
boys more than girls, as reported by the KiGGS study.
12
There are

80
disparities across the EU regarding awareness, diagnosis, treatment and management of
ADHD. These differences are reflected in the lack of, or outdated professional knowledge, in
the limited access to medication, and in scarce resources and social support.
13
Autism spectrum disorder is a group of lifelong neuro-developmental disorders; criteria for
diagnosis are defined in the DSM-IV-TR and ICD-10 international classifications. Data on
prevalence are scarce and do not allow to draw conclusions on trends. Recent surveys
reveal much higher rates than surveys conducted 30 years ago; this is the result of the
current broader concept of autism used. Nowadays, improved health and social services
have led to better diagnosis and identification of autism, sometimes even in children with
average intelligent quotient. There is no information on the average prevalence of autism in
Europe. Existing information suggests that age-specific prevalence rates for “classical
autism” could vary between 3.3 and 16.0 per 10,000 children less than 12 years of age.
These rates could increase to between 30 and 63 per 10,000 if all forms of autism spectrum
disorders are considered.
14
Psychotic disorders such as schizophrenia, schizoaffective disorders and affective and
atypical psychoses are rare in children, since schizophrenia appears typically after puberty
and peaks in early adulthood.
2
Onset of schizophrenia in childhood generally occurs after the
age of five. Its prevalence is about 1 per 10,000 in children and 1-2 per 1,000 in adolescents.
A meta-analysis shows that individuals with youth-onset of the first episode of schizophrenia
demonstrate large deficits in almost all cognitive measures.
15
Eating disorders become usually important in terms of prevalence only after the onset of
puberty. In Germany, however, the KiGGS study found that at 12 years of age 25% of girls
and 18% of boys already reported an eating disorder.
16
Bullying is an attempt to create or enforce an imbalance of power between individuals or
groups through emotional, verbal or physical aggression. Childhood bullying has long-term
effects and is strongly associated with antisocial behaviour. Boys are more likely to report
bullying and having been bullied than girls.
17,18
Bullying is more common at 11 than at 13
years of age, and bullying children may report other health risk behaviours, such as smoking
or excess drinking.
17
Most of the so-called “bullies” are also victims of bullying, and most
bullying occurs in playgrounds, although some may occur in the classroom.
18
Bullied children
have lower self-esteem, are more likely to be depressed, and are more often users of mental
health services.
19
The rates for being a victim of bullying decline between the ages of 11 and
15.
17
Differences between countries in the definition and methods for assessing bullying in
primary school children preclude direct comparisons of prevalence rates. There are
considerable cross-national variations in the frequency with which young people, in particular
11 year-olds, report having been a victim of bullying at school at least 2 or 3 times in the
previous couple of months; it varies between 4% in Sweden and 33% in Turkey.
17
An emerging threat to the mental health of children and adolescents in Europe is computer
game addiction. Computer games may have developmental benefits or positive effects for
educational or therapeutic purposes. Several studies, however, show that excessive playing
of computer games is associated with behaviours that mimic the ones of other addictions.
20
Moreover, computer game addiction may be associated with other mental disorders (e.g.
depression, anxiety, ADHD) and with impaired communication patterns (e.g. withdrawal from
the rest of the family and from school life).
21-23
Another risk posed by this condition is the
exposure to age-inappropriate content when using information technology. Contents that
may pose a risk include commercial, violent, hateful, pornographic, racist or biased content.
The number of adolescents reporting spending several hours a day using a computer,
specifically on weekends and in countries that more recently were integrated into the EU,
increased dramatically between 2002 and 2006.
17
Some studies in EU countries, mostly in
Germany and in the United Kingdom, reported percentages of overuse or behavioural
addiction to computer games and the internet of between 2% and 9% among adolescents.
21-
24
These percentages are even higher for portable video games systems.
20

81
Causes and Risk Factors
Mental disorders are typical examples of conditions with many causes and risk factors.
Genetically inherited susceptibility plays a role as well as early relationship and attachment
patterns. Perinatal problems, such as severe prematurity, mother’s exposure to infectious
agents, alcohol, tobacco, toxic chemicals and drugs while pregnant may also play a role.
Severe chronic diseases may lead to mental disorders. Parental care, particularly in the early
years, contributes to the shaping of the child’s overall mental well-being and may therefore
have a bearing on mental health. The main risks, as well as protective factors, regarding the
mental health of children and adolescents are listed in Table 6.2.
1
Table 6.2. Selected risk and protective factors for mental health of children and adolescents
(Source: WHO, 2005)
DOMAIN RISK FACTORS PROTECTIVE FACTORS
Biological
Exposure to toxins (e.g. tobacco
and alcohol) in pregnancy
Genetic tendency to psychiatric
disorder
Head trauma
Hypoxia at birth and other birth
complications
HIV infection
Malnutrition
Other illnesses
Age-appropriate physical
development
Good physical health
Good intellectual functioning
Psychological
Learning disorders
Maladaptive personality traits
Sexual, physical and emotional
abuse and neglect
Difficult temperament
Ability to learn from experiences
Good self-esteem
High level of problem-solving
ability
Social skills
Social
a) Family
Inconsistent care-giving
Family conflict
Poor family discipline
Poor family management
Death of a family member
Family attachment
Opportunities for positive
involvement in family
Rewards for involvement in
family
b) School
Academic failure
Failure of schools to provide an
appropriate environment to
support attendance and learning
Inadequate/inappropriate
provision of education
Opportunities for involvement in
school life
Positive reinforcement from
academic achievement
Identity with a school or need for
educational attainment
c) Community
Lack of community efficacy
Community disorganisation
Discrimination and
marginalisation
Exposure to violence
Lack of a sense of place
Transitions
Connectedness to community
Opportunities for constructive
use of leisure
Positive cultural experiences
Positive role models
Rewards for community
involvement
Connection with community
organizations including religious
organizations
Risk factor tend to cluster together and interact. The vulnerability to risk factors varies with
age and gender, and depends on the duration of risk impact and on the sequential or
simultaneous occurrence of the factors.
9
Many risk factors are in their turn influenced by
social determinants. Also, it is not surprising to find that that socio-economic inequalities

82
emerge in mental health disorders among adolescents in Europe, whenever such an analysis
is carried out.
25
Some children and adolescents live in difficult circumstances and are therefore vulnerable to
mental health problems. Among these, migrant children are particularly at risk. Being
member of a minority, particularly if combined with low SES, is a risk factor for mental
disorders and the adoption of risky behaviours in adolescents. Early-school leavers, young
people leaving school before the legal school leaving age and/or with limited or no formal
qualifications, are at higher risk as well.
2
Children with learning disabilities are more likely to
suffer from mental health problems: 40% suffer from some form of mental health disorder,
and the prevalence is even higher among those suffering from severe learning disabilities.
1,2
The use of alcohol and drugs can exacerbate and trigger mental health problems. For
example, alcohol can be attractive to those suffering from depression since its consumption
increases confidence and may produce a feeling of well-being, drowning out problems in the
short-term. Alcohol, however, is also a depressive substance, and it can worsen the
symptoms of depression, and thus increase the risk of suicidal thoughts and behaviour.
1,2
Challenges
The first challenge is to promote population-based prevalence studies on mental health
disorders in children across Europe, using standard methods and definitions. Another
important challenge is represented by the gap existing between needs and services, and by
the lack of preventive programmes. Although there is much variation across Europe in the
institutions and organisations involved in implementing action for children and adolescents
with mental health problem, it is estimated that only a small proportion of these children and
adolescents receive help from existing services.
2,26
Nearly all countries in Europe have made
significant progress over the past few years, and many are global leaders in the promotion of
mental health, the prevention of mental disorders, and service reform. Community-based
psychiatric inpatient units and units in district general hospitals provide mental health
services for children and adolescents in 14 of the EU15 countries and 5 of the EU12
countries. Almost all countries report that specialist mental health services for children and
adolescents are available in mental health outpatient facilities. Day treatment facilities for
children and adolescents are available in all the EU15 countries. Although a number of
reviews and meta-analyses have shown that prevention and promotion approaches can be
effective in reducing mental health problems, prevention programmes are active only in few
countries (Figure 6.1).
26,27
Figure 6.7. Number of countries with budgeted and implemented policies and large-scale
programmes for child and adolescent mental health (Source: Carral, 2009)

83
References
1. WHO. Child and adolescent mental health policies and plans. WHO, Geneva, 2005.
2. Carral V, Braddick F, Jane-Llopis E, et al. Child and Adolescent Mental Health in Europe:
Infrastructures, Policy and Programmes. European Communities: Luxembourg, 2009.
3. Roberts E, Clifford Atkinson. Prevalence of Psychopathology among Children and Adolescent.
Am J Psychiatry 1998;155:715-25.
4. Richter D, Berger K, Reker T. [Are mental health disorders on the increase? A systematic
review]. Psychiatr Prax 2008; 35:321-30 (in German).
5. Ford T, Goodman R, Meltzer H. The British child and adolescent mental health survey: the
prevalence of DSM IV disorders. J Am Acad Child Adolesc Psychiatry 2003;42:1203-11.
6. Cartwright-Hatton S, McNicol K, Doubleday E. Anxiety in a neglected population: prevalence of
anxiety disorder in pre-adolescent children. Clinical Psychology Review 2006;26:817-33.
7. Costello E, Mustillo S, Erkanli A. Prevalence and development of psychiatric disorders in
childhood and adolescence. Arch Gen Psychiatry 2003;60:837-44.
8. Knapp M, McCrone P, Fombonne E, et al. The Maudsley long-term follow-up of child and
adolescent depression. Br J Psychiatry 2002;180:19-23.
9. Ravens-Sieberer U, Wille N, Erhart M, et al. Prevalence of mental health problems among
children and adolescents in Germany: results of the BELLA study within the National Health
Interview and Examination Survey. Eur Child Adolesc Psychiatry 2008;17 Suppl1:22-33.
10. Meltzer H, Gatward R, Goodman R et al. The mental health of children and adolescents in
Great Britain: Summary report. Office for National Statistics, London, 2000.
11. Polanczyk G, Silva De Lima M, Lessa Horta B. The worldwide prevalence of ADHD: a
systematic review and metaregression analysis. Am J Psychiatry 2007:164:942-8.
12. Huss M, Hölling H, Kurth BM, et al. How often are German children and adolescent diagnosed
with ADHD? Prevalence based on the judgment of health care professionals: results of the
German health and examination survey (KiGGS). Eur Child Adolesc Psychiatry 2008:17 Suppl
1:52-8.
13. ADHD-Europe. Contribution to the Green Paper on improving the Mental Health of the
population. May 2006
14. Posada M, Garcia Primo P, Ferrari MJ, et al. European Autism Information System (EAIS)
Report on the Autism Spectrum Disorders Prevalence Data and Accessibility to Services
Questionnaire (Q-EAIS). Research Institute for Rare Diseases, Instituto de Salud Carlos III,
Madrid, 2007.
15. Rajji T, Ismail Z, Mulsant H. Age of onset and cognition in schizophrenia: meta-analysis. Br J
Psychiatry 2009;195:286-93.
16. KiGGS. [First results of the KiGGS study: health of children and adolescents in Germany].
Robert Koch Institute, Berlin, 2006 (in German).
17. HBSC. Inequalities in young people’s health: HBSC international report from the 2005/2006
survey. WHO/EURO, Copenhagen, 2008.
18. Wolke D, Woods S, Stanford K, et al. Bullying and victimization of primary school children in
England and Germany: prevalence and school factors. Br J Psychology 2001;92:673-96.
19. Olweus D. Bullying at school: basic facts and effects of a school-based intervention program. J
Child Psychology Psychiatry 1994;35:1171-90.
20. Nabuco de Abreu C, Gomes Karam R, Sampaio Goes D, et al. [Internet and videogame
addiction: a review]. Rev Bras Psiquiatr 2008;302:156-67 (in Portuguese).
21. Peukert P, Sieslack S, Barth G, et al. [Internet and computer game addiction: phenomenology,
comorbidity, etiology, diagnostic and therapeutic implications for the addictives and their
relatives]. Psychiatr Prax 2010;37:219-24 (in German).
22. Frölich J, Lehmkull G, Dopfner M. [Computer games in childhood and adolescence: relations to
addictive behaviour, ADHD and aggression]. Z Kinder Jugendpsychiatr Psychother
2009;37:393-402 (in German).
23. Grüsser SM, Thalemann R, Albreucht U, et al. [Excessive computer usage in adolescents:
results of a psychometric evaluation]. Wien Klin Wochenschr 2005;117:188-95 (in German).
24. Wölfling K, Thaleman R, Grüsser SM. [Computer game addiction: a psychopathological
symptom complex in adolescence]. Psychiatr Prax 2008;35:226-32 (in German).
25. Ravens-Sieberer U, Wille N, Erhart M, et al. Socioeconomic inequalities in mental health among
adolescents in Europe. In: WHO. Social cohesion for mental well-being among adolescents.
WHO/HBSC Forum 2007.
26. WHO. Policies and practices for mental health in Europe: meeting the challenges. WHO/EURO,
Copenhagen, 2009.
27. Stengård E,
Appelqvist-Schmidlechner K. Mental Health Promotion in Young People – an
Investment for the Future. WHO/EURO, Copenhagen, 2010.

84
7. Cancer
The term cancer, or neoplastic tumour, indicates the excessive proliferation of cells in a
tissue; it contains its own characteristics and has the ability to grow independently of its
surrounding environment. Neoplastic tumours are said to be benign if they grow only locally,
and they are said to be malignant if they have the ability to extend to other tissues and
organs and affect their function. The diagnosis of most cancers is confirmed by pathologists
who examine a sample of tissue through the microscope. Compared with other diseases,
therefore, cancer diagnosis is generally accurate and highly reproducible, which facilitates
systematic monitoring at the population level. Nevertheless, reliable statistics that allow
meaningful comparisons across countries require ad hoc rules and procedures performed by
staff devoted to the task, services which are not available in any European country.
This chapter first describes the size of the cancer problem  probability of developing cancer
in childhood, curability, and probability of dying from the disease  and how it has evolved
over time. This is followed by a review on what is known about the causes of paediatric
cancer and by a discussion of long-term impact on cured children who live on into adult life.
Main Sources of Information
Incidence and patients’ survival are recorded by population-based cancer registers that are
unevenly distributed in Europe. Most incidence data presented in this chapter are drawn from
two databases produced and maintained by the International Agency for Research on
Cancer (IARC), a specialised agency of WHO in collaboration with the International
Association of Cancer Registries (IACR). They are the Cancer Incidence in Five Continents
(http://ci5.iarc.fr/CI5i-ix/ci5i-ix.htm)
1
, and the Automated Childhood Cancer Information
System (ACCIS) (http://www-dep.iarc.fr/accis.htm)
2
projects. Long-term data on time trends
(30 years) are available only for few countries (Denmark, Finland, Sweden, Iceland, Norway).
Short-term time trend data (10-20 years) are available for the Czech Republic, Estonia,
France, Germany, Italy, Latvia, Netherlands, Poland, Slovak Republic, Slovenia, United
Kingdom, Iceland and Switzerland. Data on short-term time trends (15 years) are not
available for Cyprus, Greece, Hungary, Luxembourg, Portugal, Romania, FYR of Macedonia
or Turkey. However, even where registers have been in operation long enough to assess
trends, many cover too small a region to allow meaningful interpretations or analyses by
tumour subtype.
Survival probability figures were abstracted from publications of the EUROCARE
3,4
and
ACCIS
2,5
projects, both partly funded by the EC. Figures on cancer mortality in children, at
least in recent years, are available from the WHO mortality database online elaborations by
IARC (http://www-dep.iarc.fr/WHOdb/WHOdb.htm), for all countries included in this report,
Key Messages
• Representing less than 1% of all cases, cancer in children is a rare event, far less
frequent than in adults. However it is the first cause of death in children 1 to 14
years of age.
• The incidence of childhood cancer increased in most countries up until the 1990s.
Improved diagnostic procedures and recording accuracy may account for some of
the increase. The extent to which changed life styles and exposure to environmental
carcinogens could account for secular trends remains undetermined.
• Despite intense research, we have a poor understanding of the causes and
mechanisms underlying disease onset, leaving little room for primary prevention.
• Treatment has become more and more effective in the last four decades, so that
nowadays over 70% of children who get cancer can be cured.
• However, late adverse effects of therapy are common in survivors. Guidelines for
long-term clinical monitoring and mechanisms to deliver targeted care need to be
developed.

85
except Cyprus and Turkey.
6
Limited accuracy of the coded/registered cause of death permit
an analysis only of major cancer subtypes. Long-term trends of mortality rates are the
average of countries for which data exist since the 1950s. Direct measures or estimates of
the prevalence of children living with the disease (being treated) are not published in a
standardised and comparable format for European countries. The number of survivors living
in Europe were estimated based on prevalence rates recorded in the Nordic countries.
7
Size of the Problem
Incidence
Cancer in children younger than 15 years of age is a rare event, far less common than in
adults. It represents less than 1% of all cases of cancer in all ages. Yet it is the first cause of
death in children 1 to 14 years of age. Despite impressive improvements in the effectiveness
of treatment, at the turn of the century, cancer led to the demise of around 40% of affected
children (European average). Every year, 10,200 children aged 0-14 years are newly
diagnosed with cancer in EU27 countries; 13,200 in EU33.
Annual incidence rates per million children (Figure 7.1) vary between 101 (Czech Republic)
and 176 (Croatia); the EU27 average is 131. The rates (or disease risk) are generally greater
in South and South-Eastern Europe, with few exceptions. Overall, the risk of cancer is
slightly greater in boys than in girls, though the male to female ratio varies by cancer type.
Very few cancer subtypes are more common in girls than in boys.
Figure 7.1. Crude annual incidence rates of childhood cancer per million children by country.
0 20 40 60 80 100 120 140 160 180 200
EU27
CH
NO
IS
TR
HR
UK
SE
ES
SI
SK
PT
PL
NL
MT
LT
LV
IT
IE
DE
FR
FI
EE
DK
CZ
CY
BG
BE
AT
annual new cases per million children
The most common (30% of all) type of tumour in children is leukaemia (a cancer of white
cells in the blood). This is followed by brain tumours and tumours in the central nervous
system (about 20%), and by lymphomas (tumours that normally arise in lymph nodes but
which may show itself as malignant white cells infiltrating the skin or other organs, 14%)
(Figure 7.2). The remaining 40% of cases are an heterogeneous group of even rarer cancers

86
including sarcomas (arising in connective tissue, bones and muscles), peripheral nerve
tumours, germ cell tumours and carcinomas, collectively referred to as solid tumours.
Figure 7.2. Relative frequency of childhood cancer subtypes by country.
0% 20% 40% 60% 80% 100%
EU27
CH
NO
IS
TR
HR
UK
SE
ES
SI
SK
PT
PL
NL
MT
LT
LV
IT
IE
DE
FR
FI
EE
DK
CZ
CY
BG
BE
AT
Leukaemias Brain CNS Lymphoid tissues Eye Other
Incidence by age has characteristic distributions that vary by type of cancer: acute
lymphoblastic leukaemia (the most common type of leukaemia in children) peaks at around 4
years of age and declines thereafter. Lymphomas grow steadily with age and peak in
adolescents and young adults. Tumours of the central and sympathetic nervous system are
high in infants and then decrease with age. A similar pattern occurs for retinoblastoma, a
cancer of the eye. Other solid cancers, e.g. those arising in bones and kidney, are low in
young children but the risk increases with age (Figure 7.3).
1
Figure 7.3. Age-specific incidence rates by type of tumour.
0
10
20
30
40
50
60
70
80
90
100
0-4 5-9 10-14
Annual number of new cases per million children
Leukaemias Brain CNS Lymphomas Other

87
Survival and Mortality
Nowadays cancer mortality in children is largely determined by access to optimal treatment.
As already mentioned, the prognosis for some cancers, if diagnosed at an early stage and
treated according to modern protocols, is extremely good. Overall, 58% of all newly
diagnosed cases are alive and clear of disease 10 years after diagnosis. The proportion is
greater for lymphoid leukaemia (64%) and for certain tumours that occur only among children
(retinoblastoma and Wilm’s tumours). These figures are the averages for Europe, they thus
reflect heterogeneity across countries, and are the experience of cases treated between 10
and 20 years ago. In recent years, treatments continued to improve so that 80% of children
who develop acute leukaemia today may expect to be cured five years from diagnosis,
provided they receive the best possible treatment. Similarly, expected survival is now greater
than 58% for retinoblastoma (cancer of the eye) and sarcomas occurring in bones, kidney
and muscles (Figure 7.4). The survival of cases diagnosed today is generally higher than
70%. Such favourable trends in prognosis have been observed throughout Europe; however,
population-based data show that survival of children with cancer is lower in Eastern Europe
compared to Western Europe.
2
This probably reflects insufficient coverage of specialised
treatment centres and limited access to optimal treatment.
Figure 7.4. Increase in survival probability over time by cancer type.
0
10
20
30
40
50
60
70
80
90
100
1983-1985 1986-1988 1989-1991 1992-1994
% cured after 5 years
All Leukaemia CNS Lymphoma Other common types Rare types
The success of treatment for childhood cancer has had a profound impact on time trends of
mortality from the disease. The risk of dying from cancer in children began to decline steadily
in the early 1960s, and until recent years the trend persisted throughout Europe in boys and
girls (Figure 7.5). Nonetheless, there is evidence of disparities across countries, which are
not explained by differences in the incidence of the disease (Figure 7.6).

88
Figure 7.5. Mortality rates from childhood cancer over time; averages of countries with long-
term monitoring: (a) 4 countries, (b) 17 countries
0
10
20
30
40
50
60
70
80
90
100
1950 1960 1970 1980 1990 2000
per million children
girls (a) boys (a) girls (b) boys (b)
Figure 7.6. Mortality rates from childhood cancer in 1999 by gender and country.
0123456789
CH
NO
IS
MKD
HR
UK
SE
ES
SI
SK
RO
PT
PL
NL
MT
LU
LT
LV
IT
IE
EL
DE
FR
FI
EE
DK
CZ
BG
BE
AT
annual number of deaths per million children
boys girls
Trends
Up until the beginning of the 1990s, many European countries, as well as North America and
Australia, reported an increase of childhood cancer incidence. In Europe, on average,
incidence rates increased by 1.1% per year.
2
The extent to which improved diagnostic
procedures and recording accuracy contributed to such increase has generated much
controversy about the magnitude of the actual change in risk of the disease. Nonetheless,

89
there is general consensus that the gradual increase is real and not spurious due to
improved ascertainment, at least for the most common cancer types. The increase occurred
in every age group and is detectable in all European regions. The increase was driven mainly
by tumours of the CNS and peripheral nerves, followed by leukaemia, lymphoma and
sarcoma. Systematic analyses of European data for the last 10 years have not been carried
out, but analyses for individual countries,
8
or groups of countries,
9
suggest that trends have
levelled off or have even begun to decline (Figure 7.7).
Figure 7.7. Time trends of childhood cancer incidence rates in Italy and the Nordic countries.
0
20
40
60
80
100
120
140
160
180
200
1975 1980 1985 1990 1995 2000 2005
Annual number of new cases per million children
DK, FI, SE, IS, NO IT
Clustering
Episodes of clusters – groups of cases that represent a significant ‘sudden’ excess
compared to background incidence –, mostly involving leukaemia, are numerous and have
been reported for decades, becoming a characteristic feature of the epidemiology of
childhood cancer. Given the rarity of the disease, occasional excesses are to be expected
simply by chance fluctuation. Much of the difficulty in interpreting clusters, therefore, lies on
establishing whether the excess is compatible with chance variation or whether it is more
likely to be real, pointing therefore to a shared cause.
One of the first episodes that received much public attention and generated intensive ad hoc
investigations is known as the Sellafield excess of childhood leukaemia,
10
after the name of a
nuclear site in the northwest of England. The possibility that there had been an excess of
leukaemia in the community living in the proximity to the nuclear plants was raised by the
media in the 1980s. Several epidemiological studies have been undertaken since, to assess
in the first place whether, compared to other counties, the incidence was indeed greater than
expected, and therefore to ascertain the role of the nuclear plants. The body of information
gathered could not link the occurrence of childhood cancer in the area with environmental or
occupational exposures, in children or parents, directly originating from the nuclear plants or
from other sources. The episode remained unexplained.

90
The Sellafield case is a paradigm for many other clusters: none has ever been explained.
11
Chance has probably played a role in several of these cases. Yet, the history of cluster
episodes is long, and it dates back to the 19
th
century, when childhood leukaemia was
considered an infectious disease.
12,13
It is probable that unidentified specific agents, including
viruses, are involved in the onset of the disease. The hypothesis that the Sellafield and other
clusters could be linked to viral epidemics due to population mixing remains plausible but
virtually unexplored.
14
The recent impressive developments of high throughput technologies
applied to molecular biology may offer new opportunities to stimulate research on this topic.
Causes and Risk Factors
Much analytical research has been conducted in Western countries since the 1960s to
identify the causes of cancer in children. Causal hypotheses have addressed a variety of
environmental, physical and chemical exposures, known infectious agents and genetic
susceptibility in parents and children.
15-17
Possible sources of chemical, physical or biological
carcinogens have been suggested by descriptive studies including episodes of specific
clustering. Many of the investigated agents, however, co-exist in the environment, making it
difficult to distinguish specific exposures, particularly when relying on proxy information
derived from interview data.
For example, an excess of brain tumours
18
and leukaemia
19
in children born to farmers have
been reported in several (but not all) countries. These observations suggested a possible
influence of products used in large amounts in agricultural practices (pesticides and
herbicides), particularly those that have mutagenic properties and have been associated with
cancer in adults. However, rural populations, where farming is the prevailing economic
activity, may be exposed to rare viral infections that cause leukaemia in animals and might
generate cancer in children with an immature immune system. Another hypothesis proposes
the existence of a specific rare leukaemia virus that would cause excesses in the form of a
cluster when introduced in an isolated population group where it was previously known to be
absent. To explore and distinguish between these different hypotheses, one would need to
be able to assess specific exposures through reliable and accurate measures based, for
example, on biological markers or direct environmental assays. Most historical studies,
instead, could only rely on retrospective interviews administered to parents of affected
(cases) and unaffected (controls) children.
Exposures that have been investigated as possible causes of leukaemia, brain tumours and
other cancers in children belong to several major groups. Ionizing radiation is the only well-
established physical agent that proven to cause leukaemia as well as solid tumours in
children and adults. The excess risk is documented for exposures of moderate and high
intensity that occur in unusual circumstances, such as in the case of the Japanese
population who survived the atomic bomb, or in workers at the Chernobyl base and in the
resident community at the time of the accident. Intentional exposures are delivered only for
therapeutic scope, mainly cancer. Modern non-invasive diagnostic procedures, unlike X-rays,
entail very low doses and are increasingly replaced by new procedures that avoid ionising
radiation (e.g. ultrasound, magnetic resonance). Finally, it should be mentioned that 10%-
20% of paediatric leukaemia is attributable to ubiquitous natural background radiation.
Analytical studies, mainly using a case-control design, have investigated a wide spectrum of
parental (preconception or during pregnancy) and children exposures: low-frequency
electromagnetic fields, pesticides, hydrocarbons including benzene, insulation material
including asbestos, N-nitroso compounds and certain metal dusts and fumes; common
infections, vaccinations, allergies and proxies for the likelihood of unidentified infections;
maternal exposures during pregnancy including life style factors (e.g. diet and tobacco
smoking); maternal reproductive history, illnesses and related medicine use. Some inherited
genetic factors are associated with an increase of cancers. Genetic susceptibility has been
established for children affected by Down syndrome, Li-Fraumeni syndrome, familial
adenomatous polyposis, neurofibromatosis, ataxia telangectasia, Fanconi anaemia, all rare

91
inherited conditions which, however, explain a very small proportion of paediatric cases. At
present, none of the possible causes investigated has been firmly associated with the
disease and can explain the two main features of the occurrence of childhood cancer: the
increased incidence up until the turn of the century, and episodes of clustering.
The inability to detect discernable excess risks associated with exposures that do cause
cancer in adults, might still be due to limitations in the study design. New research is moving
towards large prospective studies, through international collaborations, that will overcome
most of the limits of research conducted so far.
20
Challenges
Despite intense research, there is still poor understanding of the causes and mechanisms
underlying the onset of childhood cancer, leaving little room for primary prevention. The first
challenge is therefore to set up research with a higher chance of identifying causes and
mechanisms. This can only be done through large prospective cohort studies using accurate
ways to determine exposure, such as biological markers and direct environmental assays.
For rare diseases such as childhood cancer, however, these studies will be very expensive.
Faced with a lack of evidence regarding causes of childhood cancer, the precautionary
principle should anyway be applied to avoid or reduce exposure of children to known
physical and chemical carcinogens in adults. This would generate benefits regarding other
diseases (see Chapter 13) and somewhat prevent the risk of developing cancer as adults. It
is well known, for example, that sunburns suffered in childhood substantially increase the risk
of skin melanoma, an aggressive type of cancer, in adulthood.
21
Similarly, for a fixed
cumulative amount of tobacco smoked (depending on duration of the habit and number of
daily cigarettes smoked), the risk of developing lung cancer is greater the earliest the habit
began and it is highest for smokers who started before the age of 14.
22
Furthermore, the
carcinogenic potential of ionizing radiation in causing leukaemia and solid tumours in adults
is greater for those exposed as children.
23,24
In recent years, immunisation against Human Papillomavirus (HPV) has been debated
among the measures applicable to children so as to prevent cancer in adults. Since the
1980s, certain types of HPV were identified as the cause of virtually all cervix cancers and a
proportion of cancers in the vagina, penis, rectum, head and neck in men and women.
Vaccines against the so-called high-risk HPV types are now available with proven efficacy in
preventing persistent infection that may lead to cancer.
25
The virus is transmitted through
sexual contact; immunisation strategies, therefore, aim at targeting children before they
become sexually active, i.e. between 11 and 12 years of age. Besides financial
considerations, much of the debate stems from concerns over vaccines’ safety and the
impact on teenage sexual behaviour. The continuation of the monitoring of immunised
cohorts will provide direct measures on the long-term efficacy and safety of vaccines, which,
for the time being, appear to be favourable. The implications on personal behaviours are
more complex and policies imposing mandatory vaccination have been poorly received by
the public. Yet, immunisation interventions are cost-effective only if they reach high
coverage. To include the HPV vaccine as part of routine immunisation programmes of
younger children would overcome much of the parents’ concerns but there are no data on
the efficacy and safety of HPV vaccines if administered together with other vaccines and in
younger children. At present, such strategy can only be the object of research. The ECDC
provides guidance on several aspects of HPV immunisation strategies to help policy-makers,
but it does not recommend a specific policy. Pilot projects currently running in several
European countries will hopefully provide the much needed information on the best policy.
The second challenge is treatment and cure. Treatment has become more and more
effective in the last four decades, so that nowadays over 70% of children who get cancer can
be cured and will live on into adult life. In Europe, however, there is evidence of disparities in
the performance of health systems in managing childhood cancer. In some countries, gaps in

92
expertise and specialised services lead to limited access to curative and least disabling
treatments. While all European countries guarantee the right to optimal health care to their
citizens, organisational and budgetary restrictions may limit treatment, in particular for rare
diseases such as some paediatric cancers. Unnecessary suffering can be reduced with
relatively small investments so that all cases of childhood cancer are managed in specialised
and highly qualified services.
The third challenge is the management of late adverse effects of therapies received for
paediatric tumour in the growing population of childhood cancer survivors. This is also a new
area of clinical research. The aim is to determine an optimal balance between clinical
monitoring for a variety of complications, in order to treat them since their early symptoms,
and the risk of burdening survivors with chronic fears about threats to their health. Most
health systems have not yet developed well-defined models or guidelines to monitor and
manage late effects once these children have grown into adulthood. This is a priority in most
European countries.
26
The fourth and final challenge is to ensure care and long-term quality of life for survivors of
childhood cancer. In the EU27 countries there are around 17,000 teenagers and young
adults (aged between 15 and 24), who had cancer when they were children. By the year
2020, it is estimated that 1 in 600 people under 50 years of age will be a childhood cancer
survivor. With continuing improvements in survival and with population aging, the prevalence
of survivors increases steadily. Yet, the success of treatments responsible for long-term
survival is not consequence-free, as people who have been given the all-clear are at an
increased risk of a number of late adverse effects. Some disabilities are soon evident; for
example, a proportion of children who undergo cranial irradiation or surgery for brain tumours
experience neurological disorders, including cognitive deficits that compromise their quality
of life permanently. Life-threatening late effects of treatment in survivors include the onset of
new cancers (particularly in the thyroid, if irradiated), cardiac and pulmonary diseases. Other
health conditions that affect the survivors’ quality of life include reduced fertility in women and
hearing and sight loss.
27
Survivors can instead be reassured that there is no evidence of an
increased risk of congenital malformations in their offspring. Fears about the health of their
own children should not prevent them from starting a family if they so wish.
28-30
Not all late effects are known as cohorts of survivors are only beginning to be middle-aged.
There is concern as to the magnitude of their risk of developing chronic illnesses that may
well become common in the general population with aging. Long-term monitoring of these
cohorts will provide information relevant to the management and prevention of late adverse
effects. It will also inform clinical research providing leads for the development of less
harmful treatments. In fact, nowadays much of clinical research in paediatric oncology is
committed to testing reduced or compartmentalised treatment and to replace old molecules
with new, less harmful ones, with the aim of reducing adverse effects of therapy, yet
maintaining efficacy. Technological developments will also help to protect unaffected organs
and tissues from irradiation that is intended only to the tumour, thus reducing the risk of late
secondary cancers.
The prospect of potential threats to their health does not necessarily undermine survivors’
psychological well-being or prevent them from engaging into social life and the pursuit of
personal goals. For example, those who have not suffered from neurological damage (who
are in effect the majority), are less likely to develop serious psychiatric disorders or risky
behaviours compared to their unaffected peers.
31
Moreover, many survivors develop positive
expectations towards their future even when they perceive a deterioration in their health.
32
Carers, including family and treating staff, have a substantial role in promoting such positive
outcomes by implementing coping strategies.

93
References
1. Curado MPEB, Shin HR, Storm H, et al (eds.). Cancer incidence in five continents, Vol. IX Lyon:
IARC, 2007.
2. Steliarova-Foucher E, Stiller C, Kaatsch P, et al. Geographical patterns and time trends of
cancer incidence and survival among children and adolescents in Europe since the 1970s (the
ACCIS project): an epidemiological study. Lancet 2004;364:2097-105.
3. Gatta G, Capocaccia R, Stiller C, et al. Childhood cancer survival trends in Europe: a
EUROCARE Working Group study. J Clin Oncol 2005;23:3742-51.
4. Gatta G, Zigon G, Capocaccia R, et al. Survival of European children and young adults with
cancer diagnosed 1995-2002. Eur J Cancer 2009;45:992-1005.
5. Pritchard-Jones K, Kaatsch P, Steliarova-Foucher E, et al. Cancer in children and adolescents
in Europe: developments over 20 years and future challenges. Eur J Cancer 2006;42:2183-90.
6. Mortality database http://www.who.int/whosis/whosis/ World Health Organization, Geneva, 2010
(accessed 7 January 2010).
7. Engholm G, Ferlay J, Christensen N, et al. NORDCAN: Cancer incidence, mortality, prevalence
and prediction in the Nordic countries: Association of the Nordic Cancer Registries. Danish
Cancer Society, 2010.
8. AIRTUM. [Childhood cancer: after the peak in the year 2000 incidence is levelling off] (in
Italian). http://www.registri-tumori.it/cms/. I numeri dell'AIRTUM, Florence, 2010.
9. Engholm G, Christensen N, Bray F, et al. NORDCAN: Cancer incidence, mortality, prevalence
and prediction in the Nordic Countries: Association of the Nordic Cancer Registries. Danish
Cancer Society, 2010.
10. Draper GJ, Stiller CA, Cartwright RA, et al. Cancer in Cumbria and in the vicinity of the
Sellafield nuclear installation, 1963-90. BMJ 1993;306:89-94.
11. Alexander FE. Clusters and clustering of childhood cancer: a review. Eur J Epidemiol
1999;15:847-52.
12. Ward G. The infective theory of acute leukaemia. Br J Child Dis 1917;14:10-20.
13. Aubertine CL, Grellety BP. [Contribution to the study of acute leukaemia]. Arch Mal Coer
1923;16:595-609 (in French).
14. Kinlen L. Childhood leukaemia, nuclear sites, and population mixing. Br J Cancer 2011;104:12-
8.
15. Laurier D, Grosche B, Hall P. Risk of childhood leukaemia in the vicinity of nuclear installations:
findings and recent controversies. Acta Oncol 2002;41:14-24.
16. Little J. Epidemiology of childhood cancer. International Agency for Research on Cancer, Lyon,
1999.
17. Ross JA, Spector LG. Cancers in children. Oxford University Press, New York, 2006.
18. Cordier S, Mandereau L, Preston-Martin S, et al. Parental occupations and childhood brain
tumours: results of an international case-control study. Cancer Causes Control 2001;12:865-74.
19. Wigle DT, Turner MC, Krewski D, et al. A systematic review and meta-analysis of childhood
leukaemia and parental occupational pesticide exposure. Environ Health Prospect
2009;117:1505-13.
20. Brown RC, Dwyer T, Kasten C, et al. Cohort profile: the International Childhood Cancer Cohort
Consortium (I4C). Int J Epidemiol 2007;36:724-30.
21. Dennis LK, Vanbeek MJ, Beane Freeman LE, et al. Sunburns and risk of coetaneous
melanoma: does age matter? A comprehensive meta-analysis. Ann Epidemiol 2008;18:614-27.
22. IARC. Tobacco smoke and involuntary smoking. IARC monographs on the evaluation of
carcinogenic risks to humans, vol. 83. IARC, Lyon, 2004.
23. IARC. Ionizing radiation, Part 1: X- and gamma (g)-radiation, and neutrons. IARC monographs
on the evaluation of carcinogenic risks to humans, vol. 75. IARC, Lyon, 2000.
24. IARC. Ionizing radiation, Part 2: some internally deposited radionuclides. IARC monographs on
the evaluation of carcinogenic risks to humans, vol. 78. IARC, Lyon, 2001.
25. Munoz N, Kjaer SK, Sigurdsson K, et al. Impact of human papillomavirus (HPV)-6/11/16/18
vaccine on all HPV-associated genital diseases in young women. J Natl Cancer Inst
2010;102:325-39.
26. Skinner R, Wallace WH, Levitt G. Long-term follow-up of children treated for cancer: why is it
necessary, by whom, where and how? Arch Dis Child 2007;92:257-60.
27. Langeveld NE, Stam H, Grootenhuis MA, et al. Quality of life in young adult survivors of
childhood cancer. Support Care Cancer 2002;10:579-600.
28. Boice JD Jr, Tawn EJ, Winther JF, et al. Genetic effects of radiotherapy for childhood cancer.
Health Phys 2003;85:65-80.
29. Madanat-Harjuoja LM, Malila N, Lahteenmaki P, et al. Risk of cancer among children of cancer
patients: a nationwide study in Finland. Int J Cancer 2010;126:1196-205.

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30. Winther JF, Boice JD Jr, Frederiksen K, et al. Radiotherapy for childhood cancer and risk for
congenital malformations in offspring: a population-based cohort study. Clin Genet 2009;75:50-
6.
31. Ross L, Johansen C, Dalton SO, et al. Psychiatric hospitalizations among survivors of cancer in
childhood or adolescence. N Engl J Med 2003;349:650-7.
32. Zeltzer LK, Recklitis C, Buchbinder D, et al. Psychological status in childhood cancer survivors:
a report from the Childhood Cancer Survivor Study. J Clin Oncol 2009;27:2396-404.

95
8. Rare Diseases and Conditions
The current definition of a rare disease, adopted by the Community Action Programme on
Rare Diseases (1999-2003), is that it should affect no more than 5 people in 10,000. Rare
diseases widely differ in terms of severity and clinical expression. Many of them are complex,
degenerative and chronically incapacitating. They often affect several organs and systems,
leading to physical, cognitive and psychological impairment. Some relatively common
conditions can hide behind rare diseases, e.g. autism (in Rett syndrome, Usher syndrome
type II, Sotos cerebral gigantism, Fragile X syndrome) and epilepsy (in Shokeir syndrome,
Feigenbaum Bergeron Richardson syndrome). This chapter deals with some of the common
features and issues related to rare diseases since many of them are covered in other
chapters (congenital anomalies, Chapter 4, neurological conditions, Chapter 5; and cancer,
Chapter 7).
Main Sources of Information
The non-governmental patient-driven alliance EURORDIS is an essential source of
information (www.eurordis.org/). The ORPHANET database is a free multilingual source of
data on rare diseases and orphan drugs; it contains information on more than 5,000 diseases
(www.orpha.net/consor/cgi-bin/index.php). EUROCAT (www.eurocat-network.eu) and
ENERCA (www.enerca.org) are databases on congenital malformations and anaemia,
respectively, and therefore they also deal with rare diseases. These registries and databases
are key instruments to stimulate knowledge and develop research on rare diseases.
Unfortunately, their distribution varies greatly in the countries covered by this report. Some
registries are compiled at European level but others are only operating at national or local
levels. The ICD-10 (see glossary), used in most countries to classify disease and death, is
not 100% appropriate for rare diseases.
Size of the Problem
The number of people affected by rare diseases is estimated to vary between 29 and 36
million in the EU27 countries, with on average around 246,000 people affected per disease.
This corresponds to about 6% of the overall population. Less than 100 rare diseases have a
prevalence rate close to the threshold of 5 per 10,000; most of the remaining rare diseases
affect one in 100,000 people, or less.
The age in which the first symptoms appear varies considerably. About half of the rare
diseases are diagnosed at birth or during childhood (e.g. spinal muscular atrophy,
osteogenesis imperfecta or brittle bone disease, Duchenne muscular distrophy), whereas the
remaining half becomes visible during adulthood (e.g. Huntington disease, amyotrophic
lateral sclerosis). Despite clinical diversities, patients and families usually refer to and
complain about the same difficulties: scarcity of expertise and knowledge, which often come
hand in hand with delayed diagnosis and difficult access to care. Whilst many rare diseases
cause symptoms in childhood, these may not translate into a specific diagnosis for years.
Key messages
• A disease is defined as rare when it affects no more than 5 people in 10,000. There are
about 7,000 chronic and often incapacitating rare diseases; around 50% of them affect
children.
• Patients with rare diseases need special centres for diagnosis, treatment, follow-up and
psychosocial support.
• The main challenges posed by rare diseases in Europe are related to their recognition
and visibility, to the development of common health care strategies, to the
enhancement of cooperation, coordination and common regulations, and to the
financial support of research for new drugs.

96
Moreover when a diagnosis is arrived at, there is lack of information about the disease and
its possible therapies, as well as lack of qualified professionals for health and social care.
Beyond problems directly related to the disease, affected people suffer from social exclusion
and discrimination, and are usually unable to find a job to get social benefits, so that
inequalities and inequities in access to care increase. As a consequence, rare diseases
become a heavy psychosocial burden for patients and families, and the lack of treatment, of
hope for recovery, and of practical support for everyday life, often affect quality of life and
self-esteem. People affected by rare diseases often have a life expectancy significantly lower
than the average in the population.
Causes and Risk Factors
Most rare diseases are genetically inherited, or are due to mutations or to chromosomal
abnormalities. Other ones are cancers, autoimmune disorders, environmental and infectious
diseases, and thus share with these causes and risk factors. For these reasons, there are
few rare diseases for which primary prevention is possible. These interventions have already
been discussed in the respective chapters, such as the prevention of neural tube defects by
supplementation with folic acid (in Chapter 4). Secondary prevention through early diagnosis
is possible in other cases and will prevent subsequent disabilities, e.g. the neonatal
screening for phenylketonuria set up in the 1960s that has allowed to prevent mental
impairment in affected children when diagnosis and treatment are established before 21 days
of life. The same applies to the recently adopted Neonatal Enlarged Metabolic Screening that
could help lower morbidity and mortality in the case of some diseases. However, consensus
has not been reached yet on this enlarged screening, especially as far as cost and
psychological implications are concerned.
1,2
Challenges
Taken together, rare diseases, are a major cause of mortality, morbidity, disability and
dependency, and have important consequences on individuals, families and societies, and
also in particular on health care systems.
3,4
Given the number of people affected, they should
be considered a serious public health problem and a priority for health care and research. On
the other hand, because when taken individually each rare disease affects a small minority of
individuals, the first challenge is to give them adequate recognition and visibility.
The second challenge is to overcome the lack of common EU strategies for health care and
research. National centres of excellence for at least some rare diseases exist in 12 Member
States. As it is impossible to have a centre of excellence for every rare disease in every
country, it is clear that expertise, rather than patients, should travel, although patients should
also be able to travel to the centres when needed. Some countries have so far tried to focus
on specific areas such as data collection, research, orphan drugs or support to patient's
organisations,
5
and several initiatives are ongoing. In other cases no clear target seems to
exist. Much more has to be done by Member States to establish common EU strategies. This
is particularly true for the so-called orphan drugs, that is, drugs that are needed by such a
small number of patients, that they are unattractive for industrial research and development.
The development of these drugs has already improved the health and quality of life of
patients affected by rare diseases, e.g. in the case of the substitutive enzymatic therapy for
children with lysosomal diseases.
6
The problem is that the price for research and
development makes it impossible for these drugs to meet the conventional criteria for cost-
effectiveness. Also, the annual cost for enzyme replacement therapy in rare diseases, such
as Gaucher and Hurler Scheie diseases, is in the order of 150,000 to 300,000 euros per
year, respectively; a cost that families cannot afford and which represents a burden also for
health systems. Only an alliance of all sectors in society, including the private sector, can
address this problem effectively.

97
Finally, national approaches to rare diseases are in many cases ineffective and generally
inefficient. EU-wide action is needed. Countries need to pool scarce resources together to
standardise and improve classification and records; they also need to share knowledge,
plans and regulations. Initial measures in this sense have already been taken,
7,8
and have
led to the setting up of ORPHANET, EURORDIS (the European Organisation for Rare
Diseases, a community of patient organisations and individuals active in the field),
EUROPLAN (the European Project for Rare Diseases National Plans Development), the
Orphan Medicinal Product Regulation (to define orphan drugs and stimulate research), and a
Committee of Experts that should build links between centres of excellence and support
researchers and health care professionals in different countries. Since 1999, 39 international
projects costing a total of around 14 million euros have been funded to support research on
rare diseases. It is clear that with new therapies and new knowledge, patients will be able to
live longer and will have new special needs. Cost, however, will also increase. Only a
coordinated EU action will allow the balancing of health outcomes with the respective social
and economic costs.
References
1. Schulze A. Expanded newborn screening for inborn errors of metabolism by electrospray
ionization-tandem mass spectrometry: results, outcome, and implications. Paediatrics
2003;111:1399-406.
2. Heringer J. Use of guidelines improves the neurological outcome in glutaric aciduria type I. Ann
Neurol 2010;68:743-52.
3. Schieppati A, Henter JI, Daina E, et al. Why rare diseases are an important medical and social
issue. Lancet 2008;371:2039-41.
4. López-Bastida J. Cost of illness and economic evaluation in rare diseases. Adv Exp Med Biol
2010;686:273-82.
5. French National Plan for Rare Diseases 2005 – 2008. Ensuring equity in the access to
diagnosis, treatment and provision of care.
www.orpha.net/actor/EuropaNews/2006/doc/French_National_Plan.pdf.
6. Beutler E. Lysosomal storage diseases: natural history and ethical and economic aspects. Mol
Genet Metab 2006;88:208-15.
7. Decision 1350/2007/EC of the European Parliament and of the Council adopted the second
programme of Community action in the field of health (2008-2013).
8. Recommendation on an action in the field of rare diseases (2009/C 151/02).

98
9. Other Conditions of Public Health Importance
9.1 Oral Health
Good oral health is essential to general health and quality of life. Yet oral disease is still a
major public health problem in some high income countries and oral health promotion is a
widely neglected area in public health.
1,2
Oral health means more than healthy teeth; the
health of the gums, oral soft tissues, chewing muscles, palate, tongue, lips and salivary
glands are also important. Tooth decay and gum disease are among the most widespread
conditions in human populations. This chapter will focus on caries as main indicator of oral
health in children.
Main Sources of Information
The most widely available indicators of oral health in children are the DMFT and the SiC
(Significant Caries) index. DMFT describes the amount of dental caries in an individual by
the number of decayed, missing or filled permanent teeth at 12 years of age. A DMFT index
lower than 3 should be considered the goal for all communities, in all countries. The SiC is
calculated by selecting the third of the population with the highest caries scores. The mean
DMFT of this subgroup is the SiC index. It brings attention to those individuals with the
highest prevalence of caries in a given population. The WHO Oral Health Programme
(http://www.whocollab.od.mah.se/expl/globalcar1.html) is the main source of data on DMFT
and SiC. Some data are available also in the Heath-for-All WHO database and from the
OECD. Few countries in Europe have established a national data collection system; only the
United Kingdom has secular data on the prevalence of caries in young adults.
Size of the Problem
The global weighted mean DMFT value is 1.61 (this comprises 188 countries); in 2004, the
European weighted mean DMFT was 2.57. The past 25 years have seen substantial falls in
the DMFT index across EU countries, but data are missing for many countries.
Improvements have been less marked in some Central and Eastern European countries
(Bulgaria, Croatia, Hungary, Latvia, Lithuania, Poland), and there has been no improvement
in deprived socio-economic groups (Figure 9.1.1).
Oral health is characterised by social inequalities in disease and patient management.
3-6
In
European countries with reliable data, one third of children have around 80% of DMFT teeth,
one fourth have around 65%, and 10% have around 40%. This means that conventional
population-based preventive methods fail to reduce inequalities, as shown by high rates of
tooth decay in high-risk groups. In 2003, the total expenditure on all aspects of care and
treatment provided by dentists in EU15 countries has been estimated at about 45 billion
euros. At least 66% of this money is probably spent to treat dental caries and its
consequences, as well as periodontal diseases.
7
Key Messages
• The most widely available indicator of oral health status in children is the number of
decayed, missing or filled permanent teeth (DMFT) in 12 year-old children. In 2004,
the European weighted mean of DMFT was 2.57.
• The past 25 years have seen substantial falls in the DMFT index across EU countries,
but the improvements have been less marked in many Central and Eastern European
countries and in deprived socio-economic groups.
• A DMFT index under 3 is considered a goal to be achieved in all communities within
countries. Promotion of oral health and prevention of oral diseases are better provided
through Primary Health Care.

99
Figure 9.1.1. Changes in national mean DMFT scores in Sweden, Portugal, Poland and the
United Kingdom between the 1980s and the first decade of 2000 (Source: Eaton, 2007).
Causes and Risk Factors
Oral health is highly related to life style factors, such as high sugar diet and oral hygiene,
while also reflecting whether or not protective measures, such as exposure to fluoride, are
present. Dental plaque is the primary causal factor for caries and periodontal diseases. For
prevention of caries at population level, it has become clear that regular exposure of the
tooth surfaces to fluorides is key and that the major anticaries benefit of tooth brushing is
given by the application of fluoride toothpaste.
8,9
Water fluoridation policies do not seem, at
least so far, to have had an impact on tooth decay trends, which are in fact similar in
countries with and those without fluoridation policies (Figure 9.1.2). Social class, frequency of
eating/drinking, brushing frequency with fluoridated toothpaste, tobacco use and general
health are other determinants of oral health.
Figure 9.1.2. Tooth decay trends in fluoridated and unfluoridated countries (Source: Eaton,
2007).

100
Challenges
The past 25 years have seen substantial falls in the DMFT index across EU countries, but
the improvements have been less marked in many Central and Eastern European countries
and in deprived socio-economic groups. An important challenge is to reduce inequalities
between countries and socio-economics groups. This may be better achieved by broadening
the spectrum of oral health programmes in order to include improvements in quality of life,
reduce health inequalities, and facilitate access to good quality care. This has already been
done by some Member States.
10
This may also be achieved by integrating them into
maternal and child health programmes and programmes for the prevention and control of
non-communicable diseases.
11
The changes in caries levels have been attributed to the use of salt, toothpaste, and fluorides
in water. However, fluoridated water and salt are available in only a few European countries
and many more children in Europe access fluoride through toothpaste. A systematic
Cochrane review has provided firm evidence for the practice of regular, twice-a-day tooth
brushing with fluoridated toothpaste to prevent dental caries.
9
There is little association
between the number of DMFT among children and the number of dentists per inhabitant.
Public health measures and free-of-charge access to oral health care are more effective.
At present, there is no permanent national surveillance system for oral health in Europe. An
important challenge is to integrate the oral health sector with the national and European
health information system, as proposed by the EGOHID (European Global Oral Health
Indicators Development) project.
12
References
1. WHO Oral Health Collaborating Centre, Malmö University, Sweden. Oral Health Country/Area
Profile Programme. http://www.whocollab.od.mah.se/index.html.
2. WHO Oral Health Collaborating Centre, Niigata University, Japan. Periodontal Country Profiles.
http://www.nigata-u.ac. jp/prevent/perio/contents.html.
3. HBSC. Inequalities in young people’s health: HBSC international report from the 2005/2006
survey. WHO, Copenhagen, 2008.
4. Wierzbicka M, Petersen PE, Szatko F, et al. Changing oral health status and oral health
behaviour profile of schoolchildren in Poland. Comm Dent Health 2002;19:243-50.
5. Harker R, Morris J. Children’s dental health in the United Kingdom 2003. London, Office for
National Statistics, 2005.
6. Blas E, Sivasankara Kurup A (Eds). Equity, social determinants and public health programmes.
WHO, Geneva, 2010.
7. Widström E, Eaton KA. Systems for the provision of oral health care, workforce and costs in the
European Union, European Economic Area and Accession States in 2003 – A Council of
European Chief Dental Officers Survey. Oral Health Prev Dent 2004;2:155-94.
8. Eaton KA, Carline MJ. Tooth brushing behaviour in Europe: opportunities for dental public
health . Int Dental J 2007;58:287-93.
9. Marinho VCC, Higgins JPT, Logan S, et al. Fluoride toothpastes for preventing dental caries in
children and adolescents. Cochrane Database of Systematic Reviews 2003, Issue 1. Art. No:
CD002278.
10. Bourgeois D. Oral health. In: Task Force on Major and Chronic Diseases of DG SANCO’s
Health Information Strand. Major and chronic diseases report 2007. European Commission,
Luxembourg, 2008 (pp. 267-79).
11. World Health Assembly. Oral health: action plan for promotion and integrated disease
prevention. WHA 60.17, Geneva, 2007.
12. Bourgeois DM, Llodra JC, Norblad A, et al. A selection of essential oral health indicators
recommended by the EGOHID project. European Commission, Luxembourg, 2005.

101
9.2 Overweight and Obesity
Obesity is currently considered a worldwide epidemic and a problem of very high public
health importance. The increasing prevalence of obesity in children raises concern in all EU
countries because of the implications for future health and the fear that health and social
services will progressively become unable to cope with the burden. Obesity is not a disease
in itself, but it is associated with a higher risk of many other diseases and conditions, some of
which start to occur in childhood. The consequences of obesity may affect not only health
and life expectancy, but also mental well-being, overall quality of life, school performance, as
well as income and productivity.
Main Sources of Information
Most experts agree that the Body Mass Index (BMI), obtained from weight and height, should
be used to calculate and compare rates of overweight and obesity in children. Weight and
height data can be gathered routinely, e.g. in child health clinics, or through sample surveys.
The latter is the preferred method when there is a need for rates that represent or
approximate real values in a population. Weight and height data can be self-reported by
individuals, or by parents in case of small children, or can be actually measured. Measured
data are preferred to self-reported data because they are more accurate, if measurement
methods are standardised. The BMI obtained in this way has then to be categorised, usually
into four groups: underweight, normal weight, overweight, and obese children. The problem
is that criteria for assigning children to these groups may vary. The most commonly used is
the reference established in 2000 by the International Obesity Task Force (IOTF), with its
cut-off points.
1
The IOTF reference, however, starts from the age of two. More recently, the
WHO has published new global growth standards for children under five years of age.
2
These standards cover all infants and children from birth, but tend to yield overweight and
obesity rates that differ from those yielded by the IOTF reference and cut-off points when
applied to the same set of data. In addition, the WHO standards do not cover children older
than five years; to obviate, WHO has merged its data for under-fives with data for older ages
taken from the 1977 US National Centre for Health Statistics (NCHS) growth reference.
3
Once again, however, rates of overweight and obesity estimated with the two methods, IOTF
and WHO, will differ. For this report, only surveys and reviews that are representative of
national populations and that used comparable methods of getting BMI data were used.
When confronted with results that differ because of different criteria used to categorise BMI
data, it was decided to present all results.
Key Messages
• The prevalence of obesity in children shows a great variability among EU countries,
being already worryingly high in some of them; the trend is probably upwards in school
children, but not in infants and pre-school children.
• A complex web of interrelated individual, family, social, economic and environmental
determinants is associated with the rise in the prevalence of obesity through changes
in diet and physical activity.
• Multi-sectoral approaches that tackle inequalities are needed at local and national
level to change these determinants and control obesity.
• Obesity starts early in life and its determinants act mainly before conception, during
pregnancy and in early infancy; strategies for prevention should concentrate on these
stages of the life course.

102
Size of the Problem
Pre-school Children
Nationally-representative data on overweight and obesity in infants and pre-school children
are available from 18 EU countries.
4
Using the IOTF reference and cut-offs, the prevalence
of overweight plus obesity at four years ranges from 11.8% in Romania (2004) to 33.2% in
Spain (2006), a three-fold difference (Figure 9.2.1). Countries in the Mediterranean region
and the British Isles report higher rates than those in Central, Northern and Eastern Europe.
Rates are generally higher in females than in males. Using the WHO standard, with cut-offs
at 1, 2 and 3 standard deviations (SD) for risk of overweight, overweight and obesity,
respectively, the rates are lower and the gender differences disappear. The difference
between the highest (Spain 2006: 17.2%) and the lowest (Lithuania 2000: 2.0%) reported
rates of BMI-for-age above 2 SD at four years is more than eight-fold (Figure 9.2.2). Data on
trends over time are available only for four countries using the IOTF reference and cut-offs
(Czech Republic, France, Netherlands and England) and for three using the WHO standard
(Czech Republic, Netherlands and Romania). They refer to children who are 24 to 59 months
old, except for England (24 to 71 months) and France (36 to 59 months). With the possible
exception of England, there is no obvious trend towards increasing prevalence in the past
20-30 years in these countries.
Figure 9.2.1. Prevalence rates (%) of overweight and obesity (IOTF reference and cut-offs) at 4
years of age by country.
0 5 10 15 20 25 30 35
Scotland 2003
N. Ireland 2002
England 2002
SE 2003
ES 2006
RO 2004
PT 2001
PL 2000
NL 2003
IT 2005
IE 2002
EL 2004
FR 2006
CZ 2001
%
Overweight Obesity

103
Figure 9.2.2. Prevalence rates (%) of BMI-for-age higher than 1, 2 and/or 3 SD (WHO reference
and cut-offs) at 4 years of age by country.
0 5 10 15 20 25 30 35 40 45 50
Scotland 2003
England 2002
SE 1997/04
ES 2006
RO 2004
PT 2001
PL 2000
LT 2000
IT 2005
EL 2003/04
CZ 2001
CY 2004
BG 2004
%
>1SD≤2SD >2SD≤3SD >3SD
School Children
Data on the prevalence of overweight and obesity in school children are available and show
increasing trends.
5
They are however difficult to use for comparisons across countries
because they were gathered with different definitions and methods, and analysed using
different references and cut-offs. WHO/EURO has coordinated from 2007 an inter-country
survey in 12 countries and one region: Bulgaria, Cyprus, Czech Republic, Ireland, Italy,
Latvia, Lithuania, Malta, Norway, Portugal, Slovenia, Sweden, and the Flemish region of
Belgium. In 2010, four more countries joined the group for the second round of surveys:
Greece, Hungary, FYR of Macedonia and Spain. The surveys were conducted on
representative samples of school children aged 6-9 years using standard methods.
Preliminary results of the first round indicate that on average 24% of the children aged 6-9
years old are overweight or obese, based on the WHO/NCHS growth standards.
Standard Health Behaviour in School Children (HBSC) surveys have been carried out for
years in children aged 11, 13 and 15 years. They provide self-reported data on overweight
and obesity; these are likely to be below the real values.
6
Figures 9.2.3 and 9.2.4 show the
data available from the latest 2005/06 HBSC surveys in children 11 and 13 years old,
respectively, by gender. The United Kingdom participated with three countries. There is little
evidence of significant age differences in overweight or obesity among either boys or girls,
but there is a tendency for 15-year-old girls to have lower levels of overweight or obesity than
those aged 11. In approximately half of countries, compared to girls, boys are significantly
more likely to be overweight or obese when they are 11 years old; and in the majority of
countries, when they are 13 and 15. Family wealth is significantly associated with overweight
or obesity in around half of countries. In most of these cases for boys, and in all of them for
girls, those from lower income families are more likely to be overweight or obese. This
pattern is strongest in Western Europe.

104
Figure 9.2.3. Prevalence of overweight plus obesity (IOTF reference and cut-offs) reported by
11-year old boys and girls in Europe, by country.
0 5 10 15 20 25 30 35
CH
NO
IS
TR
MKD
HR
Wales
Scotlan
England
SE
ES
SI
SK
RO
PT
PL
NL
MT
LU
LT
LV
IT
IE
HU
EL
DE
FR
FI
EE
DK
CZ
BG
BE
AT
%
Boys 11 y Girls 11 y
Figure 9.2.4. Prevalence of overweight plus obesity (IOTF reference and cut-offs) reported by
13-year old boys and girls in Europe, by country.
0 5 10 15 20 25 30 35
CH
NO
IS
TR
MKD
HR
Wales
Scotlan
England
SE
ES
SI
SK
RO
PT
PL
NL
MT
LU
LT
LV
IT
IE
HU
EL
DE
FR
FI
EE
DK
CZ
BG
BE
AT
%
Boys 13 y Girls 13 y
The percentage of children of 11 and 13 years of age meeting the recommendations on
physical activity (60 minutes or more of activity on 5 or more days a week) is higher in boys
(30% and 25% at 11 and 13 years of age, respectively) than in girls (22% and 15%,
respectively), and is higher at 11 than at 13 years of age. At 11 years of age, the highest
percentage was recorded in boys in Ireland and in the Slovak Republic (51%), the lowest in

105
girls in Switzerland (11%). At 13 years of age, the highest value was recorded once again in
boys in the Slovak Republic (51%), and the lowest in girls in France (5%). Differences in
levels of daily physical activity are high across countries, but are not patterned by geography.
In almost all countries boys and younger children are more active. A significant association
between low family income and lower prevalence of daily physical activity was found in under
half of the countries across all geographic regions for girls and boys. Levels of reported
physical activity are fortunately higher in 2005/06 than those recorded in the previous HBSC
survey in 2001/02.
The 2005/06 HBSC survey also shows that:
• Only about two thirds of adolescents eat breakfast every day before school and that
this percentage decreases with age and is generally higher in boys than in girls;
• Only about a third eat fruit every day or more than once a day. The percentage
decreases with age and is higher in girls;
• About a fifth take sugar-sweetened drinks every day or more than once a day. The
percentage increases with age and is higher among boys.
Needless to say, adolescents watch television. The percentage spending two or more hours
per day every weekday in front of a screen, including computer and other electronic media,
is on average around 60-70%, with the highest values in Bulgaria (more than 80% in boys
and girls) and the lowest in Switzerland (around 30% at 11 and 40% at 13 years of age). A
further round of HBSC surveys has been carried out in 2009/10 but the results were not yet
available at the time of writing this report.
Causes and Risk Factors
Figure 9.2.5 shows the complex web of individual, familiar and social determinants
associated with overweight and obesity in preschool children.
7
Obesity in children is
predicted by parental obesity, including maternal birth weight, gestational diabetes and
prenatal exposure to smoking. It is also associated with LBW: infants whose growth has
been restrained in the womb tend to gain weight, or catch up, more rapidly during the early
postnatal period, which leads to increased central fat deposition and greater insulin
resistance. But obesity is also associated with large birth weight and early growth. Most
studies show that rapid weight gain in infancy is consistently associated with increased risk.
The exclusivity and duration of breastfeeding seem to be inversely associated with childhood
and later obesity, though the adjustment for possible confounders tends to reduce the effect.
Among other family factors, short sleep duration in infancy and early childhood was found to
be associated with overweight at later ages. Recent studies have also related obesity in
adulthood to early life experience of abuse and/or neglect. Finally, several studies found a
higher risk of fatness associated with lower SES in childhood as determined by parental
occupation or education or family income, or a combination of these factors. Food insecurity
or insufficiency may affect the cause of pre-school obesity, even in high-income countries. As
far as the physical and social environments are concerned, sedentariness, including high
levels of television watching, is among the variables associated with overweight and obesity,
while increasing levels of physical activity lower the risk. Social models of consumption may
affect eating and drinking behaviours, and sedentariness. A positive association was found
between greater intakes of sugar-sweetened beverages and weight gain and obesity in
children. The association between television watching and childhood obesity is solid and
confirmed by many studies, including a non-systematic review and an intervention study.
However, the direction of causation and specific contribution of food advertising remains
equivocal; a perennial problem in interpreting many of these studies is their cross-sectional
design which raises the issue of reverse causality: while it is of course possible that the
sedentary nature of television watching may induce weight gain, it is equally likely that
obesity in its own right may be related to television viewing because other more strenuous
childhood pastimes, such as sports or active play, are uncomfortable and therefore
prohibitive for the overweight child.

106
Figure 9.2.5. The complex web of individual, familiar and social determinants associated with
overweight and obesity in preschool children (Source: Monasta, 2010).
Overweight/obesity
in children under five
Rapid growth
Catch up
Large
birthweight
In utero growth
restriction
Maternal
nutrition
Unhealthy food
and beverages
Low SES
education
Sedentarity
Breastfeeding
infant feeding
Marketing
advertising
TV
viewing
Maternal
smoking
Paternal/maternal
overweight/obesity
Maternal
diabetes
Genetic
factors
Built
environment
Parental diet and
physical activity
Food
insecurity
Food
prices
Neglect/
abuse
Short sleep
duration
Challenges
The first challenge has already been discussed at the beginning of this chapter: to gather
and to analyse data on BMI in a standard way so that rates of overweight and obesity can be
compared among and within countries, and also over time. This is essential to monitor the
progress of the epidemic and the effect of its control strategies.
The second challenge is to develop effective interventions. A systematic review has recently
shown that, despite some significant effect on intermediate outcomes (lower intake of
saturated fatty acids, television watching), no effect on BMI and other growth measures could
be attributed to a number of single or combined interventions for the prevention of overweight
and obesity in pre-school children.
8
Action research is therefore needed to study the effect of
complex multi-faceted interventions on micro (family) and macro (social) determinants on
diet, by reducing the consumption of energy-dense foods high in fat and sugars, and physical
activity. This action research would include:
• Control of smoking, diet, physical activity, disease and infection in pregnancy to reduce
low and high birth weight;
• Protection, promotion and support of breastfeeding to increase its initiation, exclusivity
and duration;
• Protection, promotion and support of appropriate and safe complementary feeding
based on healthy family diets, that will lead to improved nutrition and set the basis for a
healthy diet at older ages;
• Promotion of adequate and age-appropriate physical activity, including the reduction of
television watching and other sedentary activities, starting very early in life and with
parental participation, that will lead children to live a more active and less sedentary
life;
• Action on social determinants (income, education, occupation, built environment),
including the control of marketing of breast milk substitutes and unhealthy foods and
beverages, and incentives and/or taxes that will stimulate the purchase and
consumption of healthier foods.
All this requires firm commitment and intersectoral coordination.

107
References
1. Cole TJ, Bellizzi MC, Flegal KM, et al. Establishing a standard definition for child overweight and
obesity worldwide: international survey. BMJ 2000;320:1240-3.
2. WHO Multicentre Growth Reference Study Group. WHO Child Growth Standards based on
length/height, weight and age. Acta Paediatr Suppl 2006;450:76-85.
3. de Onis M, Onyango AW, Borghi E, et al. Development of a WHO growth reference for school-
aged children and adolescents. Bulletin of the World Health Organization 2007;85:660-7.
4. Cattaneo A, Monasta L, Stamatakis E, et al. Overweight and obesity in infants and pre-school
children in the European Union: a review of existing data. Obesity Reviews 2010;11:389-98.
5. Lobstein T, Baur L, Uauy R. Obesity in children and young people: a crisis in public health. Obes
Rev 2004;5 Suppl 1:4-104.
6. HBSC. Inequalities in young people’s health: HBSC international report from the 2005/2006 survey.
WHO, Copenhagen, 2008.
7. Monasta L, Batty GD, Cattaneo A, et al. Early-life determinants of overweight and obesity: a review
of systematic reviews. Obesity Reviews 2010;11:695-708.
8. Monasta L, Batty GD, Macaluso A, et al. Interventions for the prevention of overweight and obesity
in preschool children: a systematic review of randomised controlled trials. Obesity Reviews [E-pub
ahead of print Jun 22 2010] DOI: 10.1111/j.1467-789X.2010.00774.

108
9.3 Diabetes
Diabetes mellitus is a group of diseases characterised by high levels of glucose in the blood
resulting from defects in insulin production, insulin action, or both. Diabetes can be
associated with serious complications and premature death, but can be controlled, so that
risk of complications can be greatly reduced. Type 1 diabetes is an autoimmune disease in
which the immune system destroys the insulin-producing beta cells of the pancreas that help
regulate blood glucose levels. It mostly has an acute onset, and most often occurs in children
and adolescents. Type 1 diabetes remains by far the main form of diabetes in childhood.
Other forms of diabetes now include monogenic diseases: the various forms of permanent
and transient neonatal diabetes and the maturity onset diabetes of the young (MODY). Type
2 diabetes is due to insulin resistance and is one of the main consequences of the obesity
epidemic, since overweight and obese children are at increased risk of developing it during
childhood, adolescence and later in life.
Main Sources of Information
The main sources of information are EURODIAB and DIAMOND, the type 1 childhood
diabetes registers at European and global level, respectively. At present, the EURODIAB
registers include 47,000 children diagnosed between 1989 and 2006 and cover 40 centres.
The EUCID (European Core Indicators of Diabetes) project is another important source of
data. Population-based studies have examined the epidemiology of type 2 diabetes in
children. Their reports have been used here as sources of information.
Size of the Problem
The incidence rates of newly diagnosed cases of type 1 diabetes per 100,000 children per
year vary widely in different populations at global and European levels. In most populations,
boys and girls are equally affected and the incidence increases with age, with a peak at
puberty.
1
In Europe, a north to south gradient has been described, with Sardinia (Italy) being
an exception. In the period 1989-1994, the standardised average annual incidence rate
ranged from 3.2 cases per 100,000 per year in FYR of Macedonia to 40.2 cases per 100,000
per year in two regions of Finland. Other countries or regions with high incidence were
Sardinia (36.6), Sweden (28.8), Norway (21.1), and Northern Ireland (19.6).
2
Data from all but two out of 20 population-based registers in 17 countries, covering a 15-year
period from 1989 to 2003, show significant annual increases in incidence, ranging from 0.6%
to 9.3% (Figure 9.3.1).
3
The overall annual increase was 3.9% and the increases within the
age groups of 0–4, 5–9 and 10–14 years were 5.4%, 4.3% and 2.9%, respectively. Data from
Key Messages
• Type 1 diabetes remains the main form of diabetes in childhood, with a wide
variation in its estimated incidence rate ranging from about 3 to about 60 per
100,000 children 0-14 years of age, with a north to south gradient.
• The incidence rate is increasing alarmingly in all countries, with greater increases in
children under 5 and in Central and Eastern European countries. This is probably
associated with environmental factors acting very early in life.
• Though data on children are scarce, type 2 diabetes occurs mostly during the
second decade of life (mean age at diagnosis: 13.5 years), mainly as a
consequence of poor dietary habits and increasing rates of obesity in the first years
of life.
• Primary and secondary prevention should focus on adequate nutrition and physical
activity early in life, as well as on access to improved case management and
qualified care in multidisciplinary centres.
• Participation in Europe-wide registers and project, with targeted indicators, is
essential for monitoring and better understanding of the epidemiology of diabetes.

109
20 countries covering the 2004 to 2006 period show that Finland had the highest incidence
(more than 60 per 100,000), followed by Sweden, Scotland and Denmark, all with incidence
rates above 20 per 100,000 (Figure 9.3.2).
4
The same report shows that only five countries
were able to provide data for type 2 diabetes in children.
The number of new cases in Europe in 2005 was estimated at around 15,000, 24% in the 0–
4 age group, 35% in the 5–9, and 41% in the 10–14 years. Estimates of type 1 diabetes in
European children for 2010 range from 3.2 in Turkey and 3.9 in FYR of Macedonia to 57.4 in
Finland. Other three countries have incidence rates above 20 per 100,000: Norway 27.9,
United Kingdom 24.5, and Denmark 22.2. In 2020, the predicted number of new cases is
24,400, with a doubling in children under five.
3
Figure 9.3.1. Trend in the incidence of type 1 diabetes in some European countries in three
periods between 1989 and 2003 (Source: Patterson, 2009).
Finland (Two regions)
Sweden (Stockholm county)
UK (Northern Ireland)
Norway (8 counties)
UK (Yorkshire)
Denmark (Four counties)
UK (Oxford)
Germany (Duesseldorf)
Czech republic (Whole nation)
Luxembourg (whole nation)
Germany (Baden Wuertenberg)
Belgium (Antwerp)
Slovakia (whole nation)
Austria (whole nation)
Spain (catalonia)
Poland (Katowice)
Hungary (18 counties)
Romania (Bucharest)
Slovenia (whole nation)
Lithuania (whole nation)
P1
P
2
P
3
0
10
20
30
40
50
60
P1
P2
P3
Figure 9.3.2. Age-standardised annual incidence rates of diabetes per 100,000 children of 0-14
years of age (Source: EUCID, 2008).

110
Children with type 1 diabetes risk developing disabling and life-threatening complications at
an early age, placing a significant human and economic burden on families and societies.
Moreover, autoimmune diseases such as Coeliac disease and autoimmune thyroiditis are
associated with type 1 diabetes. As compared to the type 1 diabetic adult patients, there are
major physiological, medical, psychological, social and emotional differences in children.
These differences arise from the stages of growth and development of the child (infants and
toddlers, pre-school and school children, adolescents). Each period poses particular
management problems with regard to insulin requirements, the responsibilities of the child
and the parents, and monitoring the effects of insulin.
There is little information available on the epidemiology of type 2 diabetes in children.
5
This
affects mainly obese children over 10 years of age belonging to certain population groups.
Whereas type 1 diabetes is distributed throughout the population proportionate to socio-
economic distribution, type 2 diabetes disproportionately affects those with fewer resources,
e.g. lower income, less educated parents, with less insurance cover. Despite its milder
symptoms, type 2 diabetes in children is a severe condition. Compared to their peers with
type 1 diabetes, young people with type 2 diabetes have an increased risk of hypertension,
dyslipidaemia, albuminuria, cardiovascular diseases and polycystic ovarian syndrome.
Causes and Risk Factors
The DQ2/DQ8 genotype has been identified as a high risk for type 1 diabetes. However, the
increasing incidence over a short period of time, the low concordance rate in monozygotic
twins, and the lower frequency of the high risk genotype in recent years support the
importance of environmental pressure.
1
Population based studies have suggested that some
environmental risk factors, such as viruses (enteroviruses), may be associated with the
initiation of autoimmunity towards the beta cells of the pancreas, while life style habits may
put an overload on them. Early exposure to cow’s milk protein as a consequence of no or
short breastfeeding has also been highlighted as a risk factor. A large EURODIAB case
control study has confirmed the importance of other risk and protective factors.
3
Among the
former, there are perinatal factors such as maternal pre-eclampsia, neonatal respiratory
disease, jaundice and high birth weight, as well as rapid weight gain in infancy and high BMI
during childhood. Atopic disease and early supplements of vitamin D, which probably act as
immuno-modulating agents, appear to be protective. As far as type 2 diabetes is concerned,
up to 25% of obese children have impaired glucose tolerance, placing them at high risk.
Overweight and obesity are therefore the most important risk factors for type 2 diabetes.
Challenges
Although the mechanism through which the risk factors operating early in life lead to the
development of type 1 diabetes is not yet fully understood it seems important to start taking
preventive measures from the perinatal period through the early months and years of life.
Actions should include control of weight gain in pregnancy, prevention and treatment of pre-
eclampsia, protection, promotion and support of breastfeeding, increased physical activity,
and improved nutrition at school and at home.
An important challenge is to further broaden the participation in Europe-wide registers and
projects such as EURODIAB, EUCID and EUROBIROD (European Best Information through
Regional Outcomes in Diabetes)
6
for monitoring the epidemiology of diabetes and quality of
care. Case management should be optimised throughout Europe by means of:
• Access to qualified and multidisciplinary specialists, including paediatricians,
nutritionists, diabetes nurses and educators.
• A solid infrastructure for easy access to specialist teams, protocols, databases, and
recall systems for regular reviews.
• Universal access to medical technologies such as improved insulin administration and
blood glucose monitoring devices.

111
• Effective parenting and children participation through full understanding of the disease,
careful planning of diet and physical activity, daily monitoring and adjustments of insulin
dosage.
• Group activities such as peer-to-peer groups and diabetes camps.
• Identification and implementation of specific participation in social life, e.g. training of
schoolteachers and sports.
The SWEET Project aims to address these issues by supporting the development of centres
of reference for paediatric and adolescent diabetes services across EU countries.
7
References
1. Soltesz G, Patterson CC, Dalquist G on behalf of EURODIAB STUDY. Worldwide childhood type
1 diabetes incidence: what can we learn from epidemiology? Paediatric Diabetes 2007;8 (Suppl
6):6-14.
2. EURODIAB ACE Study Group. Variation and trends in incidence of childhood diabetes in Europe.
Lancet 2000;355:873-6.
3. Patterson C, Dahlquist G, Gyurus E, et al, and the EURODIAB Study Group. Incidence trends for
childhood type 1 diabetes in Europe during 1989-2003 and predicted new cases 2005-20: a
multicentric prospective registration study. Lancet 2009;373:2027-33.
4. EUCID. Final report of the European Core Indicators on Diabetes Project. European Commission
DG SANCO, Luxembourg, 2008.
5. Rosenbloom AL, Silverstein JH, Amemiya S, et al. ISPAD Clinical Practice Consensus Guidelines
2006–2007. Type 2 diabetes mellitus in the child and adolescent. Paediatric Diabetes 2008;9:512-
26.
6. The BIRO Consortium. Best Information through Regional Outcomes: a shared European diabetes
information system for policy and practice. A public health project supported by the European
Commission. Perugia, 2009.
7. Better control in paediatric and adolescent diabetes: working to create centres of reference.
http://sweet-project.eu/html/en/index_html (accessed 18 February 2011).

112
9.4 Cardiovascular Diseases and Stroke
Cardiovascular diseases in children include a wide variety of congenital and acquired
conditions, the latter being a consequence of infections and autoimmune disorders. This
chapter focuses on the main causes of cardiovascular diseases in children and on the risk
factors for cardiovascular disease which are increasingly recognised as being the
consequence of early social and environmental exposure and life styles.
1
It also covers
thrombosis and stroke as rare but frequently overlooked paediatric issues.
Main Sources of Information
Systematic reviews and practice guidelines are the main sources of information, in addition
to the EUROCAT register and database for congenital malformations. For the majority of
these diseases, and for stroke, there are few detailed country specific data.
Size of the Problem
Congenital Heart Diseases
Congenital heart diseases are among the most frequent congenital defects (see Chapter 4).
In Europe, prevalence ranges from 30 to 180 per 100,000 births, with wide variations among
countries depending on practices for prenatal diagnosis and elective termination of
pregnancy. The variable severity of the heart defect, the timeliness of diagnosis and the
quality of available surgical and medical care determine a substantial variation in the quality
of life of the affected children, which may range from premature death to severe impairment
to a completely normal life.
2,3
Rheumatic carditis
Rheumatic fever is an immuno-mediated disease caused by common streptococcal
pharyngeal infection (known colloquially as ‘strep throat’), which, if unrecognised and
untreated, can eventually lead to chronic carditis. There are geographical differences in
incidence; in Western Europe the incidence rate is low, less than 10 per 100,000 children per
year, while in Eastern Europe the incidence is higher.
4
Thrombosis, Thromboembolism and Stroke
Thrombosis is the development of a blood clot inside a blood vessel, which causes
obstruction to the blood flow. If the clot breaks loose, it is carried by the blood stream
(thromboembolism) and it can plug another vessel.
5-7
Stroke is a rapid loss of brain functions
due to disturbances in the cerebral blood supply. Venous and arterial thromboembolism,
albeit rare, are increasingly recognised as paediatric concerns. Population data on the
prevalence of thrombosis and stroke in children in Europe are scanty. The reported incidence
of stroke is 1.9-3.1 per 100,000 children per year, with children under one year of age
Key Messages
• Congenital heart diseases are the most frequent causes of cardiovascular disease
among children in Europe. Rheumatic carditis is still common in some Eastern
European countries. Venous and arterial thromboembolism, familial
hypercholesterolemia, and stroke, albeit rare, are increasingly recognised as a
paediatric concern.
• Child poverty, dietary habits, smoking, obesity and insufficient physical activity are
important risk factors for cardiovascular diseases later in adulthood.
• Prevention of cardiovascular disease, as well as control of risk factors for
cardiovascular disease, should start early, before conception and during pregnancy,
and should continue throughout infancy and childhood.

113
presenting a higher incidence.
8-9
Long term admission to hospital, from 20 to 80 days on
average, and subsequent disabilities, are common.
10
Cardiovascular Risk
It is difficult to quantify the proportion of healthy children that are at risk of cardiovascular
disease in adult life, since this depends also on genetic susceptibility. All overweight and
particularly obese children should be considered at risk, with the addition of children affected
by familial hypercholesterolemia.
11
Causes and Risk Factors
Factors potentially leading to congenital heart diseases include maternal infections, such as
rubella, maternal use of alcohol and other drugs (e.g. hydantoin, lithium, thalidomide),
maternal illness (diabetes, phenylketonuria, systemic lupus erythematosus), and genetic
defects. Vaccination against rubella, reduced alcohol consumption, pharmacovigilance and
appropriate use of drugs in pregnancy, together with effective treatment of maternal disease,
can reduce the burden of congenital heart disease. Supplements of folic acid aimed at
decreasing the incidence of neural tube defects may also reduce the incidence of congenital
heart defects.
Rheumatic disease is clearly associated with unfavourable environmental conditions and low
SES. The increased incidence of thromboembolism and stroke is probably due to a number
of factors such as improved survival from serious underlying illnesses, greater use of
invasive vascular procedures and devices, and a growing awareness, but also to raising
prevalence of obesity as a predisposing risk factor.
Challenges
With the exception of congenital heart diseases (see Chapter 4), insofar as cardiovascular
diseases and stroke are concerned, there are few detailed country-specific data. The first
challenge, therefore, is to set up a standardised data collection system that will allow
comparisons and analysis of trends between countries.
The second challenge is timely prevention, including the control of risk factors. This should
start very early, before conception and during pregnancy, and continue throughout infancy
and childhood. Primary prevention is based on preconception counselling, improvement of
housing conditions for the poorest households, adequate nutrition and physical activity from
infancy and childhood, and diagnosis and treatment of streptococcal pharyngitis. Secondary
prevention includes prenatal ultrasound screening for congenital defects, introduced over 20
years ago and now increasingly available in all European countries. There are large regional
variations in screening practices in Europe, as well as in organisational and cultural factors,
associated with wide differences in prenatal detection rates. Widespread teaching and
training is required to achieve a uniform standard.
12
Screening for familial
hypercholesterolemia is not recommended, but children with high cholesterolemic levels
should be considered for medical treatment.
13
As far as specialist care is concerned, the challenge is to make access to referral centres for
child heart surgery available to all children through appropriate inter-country agreements
when necessary, and increasing inter-country collaboration and adoption of common
evidence based guidelines for emerging conditions such as stroke.
14
Access to appropriate
drugs is still a problem: studies in Europe report that about 60% of the most commonly used
cardiovascular medications are off-label for the paediatric population and therefore their use
should not be permitted. Efforts are needed to stimulate good quality paediatric research to
better identify children at risk, as well as effective protocols for prevention and treatment. In
addition, efforts are needed to improve drug labelling for children.
15

114
References
1. Galobardes B, Smith GD, Lynch JW. Systematic review of the influence of childhood socio-
economic circumstances on risk for cardiovascular disease in adulthood. Ann Epidemiol
2006;16:91-104.
2. Jenkins KJ, Beekman Iii RH, Bergersen LJ, et al. Databases for assessing the outcomes of the
treatment of patients with congenital and paediatric cardiac disease: the perspective of
cardiology. Cardiol Young 2008;18 Suppl 2:116-23.
3. Jacobs ML, Jacobs JP, Franklin RC, et al. Databases for assessing the outcomes of the
treatment of patients with congenital and paediatric cardiac disease: the perspective of cardiac
surgery. Cardiol Young 2008;18 Suppl 2:101-15.
4. Tibazarwa KB, Volmink JA, Mayosi BM. Incidence of acute rheumatic fever in the world: a
systematic review of population-based studies. Heart 2008;94:1534-40.
5. Goldenberg NA, Bernard TJ. Venous thromboembolism in children. Hematol Oncol Clin North
Am 2010;24:151-66.
6. Van Ommen CH, Heijboer H, Büller HR, et al. Venous thromboembolism in childhood: a
prospective two-year registry in the Netherlands. J Pediatr 2001;139:676–81.
7. Kuhle S, Massicotte P, Chan A, et al. Systemic thromboembolism in children: data from the 1-
800-NO-CLOTS Consultation Service. Thromb Haemost 2004;92:722–8.
8. Paediatric Stroke Working Group. Stroke in childhood: clinical guidelines for diagnosis,
management and rehabilitation. London, Royal College of Physicians, 2004.
9. Laugesaar R, Kolk A, Uustalu U, et al. Epidemiology of childhood stroke in Estonia. Pediatr
Neurol 2010;42:93-100.
10. Study of Outcome in Childhood Stroke Network
http://www.childstroke.org.uk/component/option,com_frontpage/Itemid,1/.
11. Rodenburg J, Vissers MN, Wiegman A, et al. Statin treatment in children with familial
hypercholesterolemia: the younger, the better. Circulation 2007;116:664-8.
12. Sharland G. Fetal cardiac screening: why bother? Arch Dis Child Fetal Neonatal Ed
2010;95:F64-8.
13. Cannioto Z, Tamburlini G, Marchetti F. Statins for children? A word of caution. Eur J Clin
Pharmacol 2009;65:217-8.
14. Roach ES, Golomb MR, Adams R, et al. Management of stroke in infants and children: a
scientific statement from a Special Writing Group of the American Heart Association Stroke
Council and the Council on Cardiovascular Disease in the Young. Stroke 2008;39:2644-91.
15. Pasquali SK, Hall M, Slonim AD, et al. Off-label use of cardiovascular medications in children
hospitalized with congenital and acquired heart disease. Circ Cardiovasc Qual Outcomes
2008;1:74-83.

115
9.5 Coeliac Disease
Coeliac disease (genetic gluten intolerance) is an immune mediated enteropathy triggered by
the ingestion of gluten, the major protein component of wheat, and related proteins in rye and
barley, in genetically susceptible individuals. The disease can present in early infancy with
gastrointestinal symptoms and malabsorption (classical form), but more frequently later in life
with other signs and symptoms as short stature, anaemia, abdominal pain and a variety of
autoimmune disorders (atypical form). Due to increased awareness of atypical forms and
new diagnostic tests, most cases are now diagnosed in childhood.
Main Sources of Information
Systematic reviews and other scientific articles identified by a systematic literature search.
Prevalence rates may be affected by bias related to case definition and case selection:
differences between tests for prevalence assessment, types of antibodies, non-mandatory
biopsy, and patient sampling. Moreover, ICD-9 and ICD-10 codes refer only to the
malabsorption syndrome, which in European countries accounts for only about 0.1-0.5% of
all admissions to hospital.
Size of the Problem
Although with some variability, several studies and systematic reviews highlight that coeliac
disease is a common disorder with a prevalence in the general population that is close to 1%
(Table 9.5.1).
1-3
The rate of diagnosis of coeliac disease has markedly increased in recent
years due to higher awareness of the disease and the introduction of simple serological tests
with high specificity; however, it is unlikely that the true prevalence has really increased in
the population.
Table 9.5.1. Prevalence of coeliac disease in some European countries
CZ 0.45% NL 0.1%
DK 0.2-1.2% PT 0.74%
EE 1.1% ES 0.3-0.9%
FI 0.6-1.2% SE 0.6-1.8%
DE 0.2-1.5% UK 0.8-1.5%
HU 1.1% IS 1.1%
IE 0.8% NO 0.3-0.8%
IT 0.3-1% CH 0.1-0.75%
There are no detailed country specific data on mortality in the general population. Cohort
studies and surveys show that, when compared to the general population, symptomatic
patients with coeliac disease have a 2 to 3-fold excess mortality. Causes of death show an
excess risk of cancer, with non-Hodgkin’s lymphoma accounting for two thirds of the cases.
No excess mortality and morbidity has been reported in patients with mild or asymptomatic
coeliac disease,
4
with the exception of reduced bone health.
5
Key Messages
• Increased awareness and new diagnostic tests have revealed in the last two decades
that coeliac disease is a common condition, with a prevalence of about 1% in the total
population in Europe.
• Coeliac disease is an important burden for societies and health systems due to its high
prevalence, wide range of signs and symptoms, and associated risk of autoimmune
disease, cancer and increased mortality.
• The disease satisfies many criteria for a population screening, but more research is
needed to explore further the benefits and risks of such a strategy.

116
Coeliac disease is a common condition with a variety of possible presentations. Unnecessary
health examinations and under-diagnosis with misdiagnosis of other conditions (e.g.
allergies) are common in patients with coeliac disease, with a consequent cost for the
individual, the health system and the society. The increasing use of non-validated diagnostic
tests may result in over-diagnosis and growing number of prescriptions for gluten-free diets,
with increased spending in public health care.
6
Causes and Risk Factors
Coeliac disease occurs in genetically predisposed people. The factors that lead to the
development of the disease in predisposed individuals when they are exposed to gluten or
gluten-like proteins are still under investigation. They include infections with intestinal
viruses, the presence of other diseases (e.g. Down syndrome, type 1 diabetes, immuno-
mediated disorders), and dietary factors. Among these, the timing of introduction of gluten
and the diet the infant has when this occurs, have attracted the interest of researchers.
Infants exposed to gluten in the first three months have 5 times the risk of developing coeliac
disease compared to those exposed at 4 to 6 months. Those exposed when older than 6
months old have only a slightly increased risk. Prolonging breastfeeding until the introduction
of gluten is associated with a reduced risk of developing coeliac disease in infancy and
childhood.
7,8
Challenges
Knowledge and awareness on coeliac disease has massively increased in the last 20 years.
However, under-diagnosis is still very common. Prevalence rates may be affected by bias
related to case definition and case selection (differences between tests, types of antibodies,
non-mandatory biopsy, and patient sampling). An important challenge is to improve active
case finding through newly available rapid point-of-care tests among patients who seek
medical advice,
9,10
as well as evidence-based guidelines for diagnosis and treatment. There
is a general agreement on investigating systematically for coeliac disease patients with
symptoms (e.g. growth failure, anaemia) or other conditions associated with the disease
(type 1 diabetes, Hashimoto disease, Down syndrome).
11,12
Primary prevention at the
moment is limited to the promotion of exclusive breastfeeding and its continuation when
complementary foods containing gluten are introduced to the infant’s diet.
Another challenge is to promote effective patients’ education to a simple and affordable
gluten-free diet, which should not depend only on industrial products with an average cost
higher than ordinary foods. On the other hand, availability of gluten-free foods is fundamental
in places as school canteens, but this is heterogeneously implemented across different
regions in Europe. The mandatory disclosure of substances containing gluten on food labels
is supported by the law on food labelling enforced by the EU in 2005, yet the disclosure of
possible cross-contamination still remains unsupported.
Finally the disease satisfies many criteria for a population screening, but further research and
collaborative studies between epidemiologists and clinicians are needed to find an
agreement on screening of first and second-degree relatives of patients with asymptomatic
coeliac disease. Population screening is debated and no country in the world has yet
adopted it (Table 9.5.2).
1

117
Table 9.5.2. Arguments for and against population screening for coeliac disease.
For Against
• Early clinical detection is difficult
• Condition is common
• Screening tests are highly sensitive and
specific
• Untreated disease could lead to increase
mortality, morbidity and high costs
• Effective treatment is available
• Implications of a false positive
diagnosis
• Lack of complete knowledge on the
natural history of the disease
• Uncertainty on the effectiveness of the
therapy (diet) in preventing all disease-
related complications*
• Variable compliance with treatment
(strict gluten-free diet)**
* There is limited evidence that adherence to a gluten-free diet will prevent and/or improve
complications in which the pathogenic mechanisms is uncertain.
13,14
** Compliance in adults range from 40% to 90%, and is reported to be lower for asymptomatic cases
detected through screening.
15
References
1. Cataldo F, Pitarresi N, Accomando S, et al; SIGENP; GLNBI Working Group on Coeliac
Disease. Epidemiological and clinical features in immigrant children with coeliac disease: an
Italian multicentre study. Dig Liver Dis 2004;36:722-9.
2. Rewers M. Epidemiology of celiac disease: what are the prevalence, incidence, and progression
of celiac disease? Gastroenterology 2005;128 (4 Suppl1):S47-51.
3. Toftedal P, Hansen DG, Nielsen C, et al. Questionnaire-based case finding of celiac disease in
a population of 8- to 9-year-old children. Paediatrics 2010;125:e518-24.
4. Rubio-Tapia A, Kyle RA, Kaplan EL, et al. Increased prevalence and mortality in undiagnosed
celiac disease. Gastroenterology 2009;137:88-93.
5. Godfrey JD, Brantner TL, Brinjikji W, et al. Morbidity and mortality among older individuals with
undiagnosed celiac disease. Gastroenterology 2010;139:763-9.
6. Gasbarrini G, Miele L, Malandrino N, et al. Celiac disease in the 21
st
century: issues of under-
and over-diagnosis. Int J Immunopathol Pharmacol 2009;22:1-7.
7. Norris JM, Barriga K, Hoffenberg EJ, et al. Risk of coeliac disease autoimmunity and timing of
gluten introduction in the diet of infants at increased risk of disease. JAMA 2005;293:2343-51.
8. Akobeng A, Ramanan A, Buchan I, et al. Effect of breastfeeding on risk of coeliac disease: a
systematic review and meta-analysis of observational studies. Arch Dis Child 2006;91:39-43.
9. Berti I, Della Vedova R, Paduano R et al. Coeliac disease in primary care: evaluation of a case-
finding strategy. Dig Liver Dis 2006;38:461-7.
10. Korponay-Szabó IR, Szabados K, Pusztai J. Population screening for coeliac disease in primary
care by district nurses using a rapid antibody test: diagnostic accuracy and feasibility study.
BMJ 2007;335:1244-7.
11. NIH Consensus Development Conference on Celiac Disease. National Institute of Health. 2004
Jun 28-30;21:1-23.
12. Fasano A. Should we screen for coeliac disease? Yes. BMJ 2009;339:b3592.
13. Troncone R, Ivarsson A, Szajewska H, et al; Members of European Multi-stakeholder Platform
on CD (CDEUSSA). Review article: future research on coeliac disease - a position report from
the European multi-stakeholder platform on coeliac disease (CDEUSSA). Aliment Pharmacol
Ther 2008;27:1030-43.
14. Haines ML, Anderson RP, Gibson PR. Systematic review: The evidence base for long-term
management of coeliac disease. Aliment Pharmacol Ther 2008;28:1042-66.
15. Hall NJ, Rubin G, Charnock A. Systematic review: adherence to a gluten-free diet in adult
patients with coeliac disease. Aliment Pharmacol Ther 2009;30:315-30.

118
9.6 Asthma and Allergic Diseases
Asthma is a chronic, inflammatory disease in which the airways become sensitive to
allergens and other triggers of bronchial constriction. Its symptoms are respiratory (cough
and difficult breathing) and may be either constant or intermittent. Allergic conditions such as
rhinoconjunctivitis and eczema (a skin condition with onset in infants and young children),
are common in children. Food allergy is an allergic response to a variety of foods, which
causes symptoms that may range from uncomfortable to life threatening. Allergic diseases
may coexist in the same child, although generally appearing at different life stages. Only
asthma and the commonest allergic conditions in children, such as eczema,
rhinoconjunctivitis and food allergy will be discussed in this chapter.
Main Sources of Information
For data on prevalence and trends, the sources are the International Study of Asthma and
Allergies in Childhood (ISAAC),
1
systematic literature reviews, some country-specific
surveys, and the Global Initiative for Asthma (GINA) reports.
2
For hospital admission, the
sources are the WHO European Hospital Morbidity Database,
3
and the GINA reports. For
mortality, the GINA reports are the main source of data. Heterogeneity in case detection and
definition may differentially affect the databases, making comparisons problematic. The
ISAAC questionnaires are the most widely used methods of case detection and are therefore
the main source of reliable data.
Size of the Problem
Asthma and allergic diseases are the most common chronic illnesses among children in
Europe, accounting for a substantial proportion of childhood admissions to hospital under the
age of 12. The prevalence of asthma and allergic conditions in Europe varies widely. In
general, a higher prevalence of eczema, rhinoconjunctivitis and asthma is reported by
Northern European countries such as the United Kingdom, Ireland and Scandinavia, while
the lowest rates are usually found in Eastern and Southern countries (e.g. Bulgaria, Greece,
Hungary, Lithuania, Poland, Romania) (Figure 9.6.1). Countries with high prevalence of
asthma and allergic diseases in children 6-7 years old also show high prevalence in the age
group of 13-14 years, with few exceptions. Wide geographical variations in the prevalence of
allergic conditions are reported also within countries. For example, the prevalence of wheeze
in children who are 6-7 years old in 10 different centres participating in the ISAAC study in
Italy and Spain ranges between 5.4% and 9.7%, and between 7.1% and 12.9%, respectively.
Similar wide variations in prevalence are observed also for other allergic conditions in other
countries and/or age groups. These variations within a population of a similar genetic pattern
are not surprising and reinforce the hypothesis of a role for environmental determinants in
the origin of allergic conditions. For this same reason, the prevalence of asthma is generally
Key Messages
• Asthma and allergic conditions, such as eczema, rhino conjunctivitis and food
allergies are very common in children in Europe and place a high burden on
patients, families and the health care system.
• Countries in Northern Europe report the highest prevalence of asthma and allergic
conditions, although rising trends have been observed over the last decade in
several countries in Eastern and Southern Europe.
• Causes and risk factors are complex and include genetically inherited susceptibility
and environmental exposures.
• Strategies to reduce the burden of asthma and allergic conditions should aim at
improving prevention at both household and community level, access to good
quality case management (including essential drugs), and patient and family
education.

119
higher in urban areas compared with suburban areas, and is even lower in communities
living in areas of high altitudes.
2
Figure 9.6.1. Prevalence rates of symptoms of eczema, rhinoconjunctivitis and asthma in
children between 6 and 7 years of age in some countries (Source: ISAAC Phase Three studies).
AU 2002-3
BE 2002
BG 2002
HR 2002
EE 2001
DE 1999
ES 2001
GR 2000
HU 2003
IT 2002
LT 1998-9
MT 2001-2
PL 2002
PT 2002
SE 2002
UK 2001-2
E
c
z
e
m
a
0,0
5,0
10,0
15,0
20,0
25,0
Eczema Rhynocongiunctivitis Asthma
In most European countries, the prevalence of allergic conditions continues to increase
(Figure 9.6.2). Important increases in the prevalence of asthma have been reported in
Eastern Europe, probably due to the rapid changes in life style. With increasing urbanisation,
further increases are likely to occur, with a higher burden of asthma in Eastern Europe. A
stable prevalence, or even some reduction, has been observed in some regions, in particular
within countries where allergic conditions had already reached high levels (Ireland, United
Kingdom, Sweden).
1,4-7
Figure 9.6.2. Annual changes in prevalence rates of eczema, rhinoconjunctivitis and asthma in
children between 6 and 7 years of age in some countries.
AU
BE
BG
EE
DE
IT
LT
MT
PL
PT
ES
SE
UK
AU
BE
BG
EE
DE
IT
LT
MT
PL
PT
ES
SE
UK
AU
BE
BG
EE
DE
IT
LT
MT
PL
PT
ES
SE
UK
-0,20
0,00
0,20
0,40
0,60
0,80
1,00
Eczema Rhynocongiunctivitis Asthma
In most countries in Europe, there has been a general declining trend of asthma mortality in
the general population. This pattern has been primarily attributed to changes in
management, in particular the increasing use of inhaled corticosteroids. However, there are a
number of countries in Western and Eastern Europe where mortality from asthma has not
fallen over the last decade to the degree observed in other countries. High case fatality rates
are likely to be due to a number of factors including access to health care, and in particular to
drugs, investments in patients’ education, and quality of care in emergency medical services.

120
Allergic conditions place a high burden on the health care system and society. Asthma is one
of the leading causes of outpatient visits and hospital admissions in children, representing
3%-15% of total admissions, half of which occur in children younger than 4 years of age.
3,8
Anti-asthmatic drugs, such as bronchodilators and steroids, are among the most prescribed
drugs in children, accounting for 19% of outpatient prescriptions in Italy, 13.9% in Denmark,
9.1% in Norway and 6.2% in the Netherlands.
9-10
Indirect costs are also very high. In the
United Kingdom and Ireland it is estimated that overall about 20 million working days are lost
due to childhood asthma each year.
2
The prevalence of food allergy is uncertain, also
because various types of food intolerance are frequently confused with food allergy, and
symptoms may remain unrecognised.
Causes and Risk Factors
Childhood asthma is a disease, or more likely a group of diseases, caused by a complex
interaction of factors, which is not yet completely understood. There is certainly a genetic
basis, such as an inherited susceptibility to allergens, or to bronchial reactivity. But this
susceptibility can also be shaped by early exposure to infections and allergens, usually very
early in life. Triggers include respiratory infections, most frequently in the earliest years, and
exposure to allergens, most frequently later on in childhood. Some children have exercise-
induced or stress-induced asthma. The environment plays also an important role in causing
exacerbations of asthma in asthmatic patients and maybe in triggering the development of
asthma in susceptible subjects. Also the cause of eczema is not completely known. It is
commonly found in children with allergies, or who will develop allergies, and/or in children
with parents or siblings who have allergies, and it is frequently linked to exposure to certain
foods. The hygiene hypothesis, which interprets the inverse association in allergy risk with
family size as a result of differential exposure to infections acquired in childhood, and
explains it with an immuno-modulating effect of early infections, is not yet definitely
confirmed.
11
Recently, the increased risk of developing asthma in children born from
caesarean section has been explained with the reduced early exposure to bacterial
contamination at birth.
12
The main risk factors for developing childhood asthma are: presence of eczema or allergic
rhinitis, family history of asthma and/or allergies, LBW or being overweight, exposure to
cigarette smoke before and/or after birth, being male and being raised in a low-income
environment, exposure to exhaust fumes or other types of pollution. Risk factors for
rhinoconjunctivitis and eczema are a family history of the disease, while breastfeeding is a
known protective factor. As mentioned above, asthma and allergic diseases are more
common in industrialised and urbanised societies than in the rural and agricultural ones,
although these differences are becoming less defined.
Challenges
The first challenge is to use standard methods of case detection and definition (e.g. using the
ISAAC questionnaires) in order to make analysis of trends and comparisons across and
within countries more reliable.
Asthma is a common condition with a high burden on individuals, families and society. A
comprehensive public health approach is needed to reduce the burden of asthma, including:
• Extensive patient and family education;
• Identification and control of environmental triggers;
• Measures to reduce tobacco smoking, improve housing and reduce exposure to indoor
and outdoor air pollutants;
• Objective monitoring of severity;
• Development of a comprehensive step-wise medication programme focusing on anti-
inflammatory therapy;
• Plans for home management of exacerbations and regular follow-up care.

121
All of the above must be done with an equity approach. Asthma affects some minority and
low socio-economic groups disproportionately. Socio-economic factors also reduce access to
appropriate health care and tend to be related to adverse health outcomes.
The national asthma public health programmes developed in a number of Scandinavian
countries, particularly in Finland, are considered a model for their effect on morbidity and
mortality. The United Kingdom National Asthma Campaign is a successful example of a
national education, management, research-based programme which has contributed to
reducing the burden of asthma.
2
The availability of anti-asthmatic drugs is limited by their
cost in some Eastern European countries. Confidential inquiries have shown substandard
routine care in Eastern and North-Western Europe, where under-treatment and overuse of
anti-allergic drugs have been reported.
2,9,13
References
1. International Study of Asthma and Allergies in Childhood (ISAAC), http://isaac.auckland.ac.nz/
2. GINA, 2004. Global burden of asthma
http://www.ginasthma.com/ReportItem.asp?l1=2&l2=2&intId=94.
3. WHO, 2010. European hospital morbidity database http://data.euro.who.int/hmdb/index.php.
4. Patel SP, Järvelin MR, Little MP. Systematic review of worldwide variations of the prevalence of
wheezing symptoms in children. Environ Health 2008;10:57.
5. Von Hertzen L, Haahtela T. Signs of reversing trends in prevalence of asthma. Allergy
2005;60:283-92.
6. Anandan C, Nurmatov U, van Schayck OC, et al. Is the prevalence of asthma declining?
Systematic review of epidemiological studies. Allergy 2010;65:152-67.
7. Malik G, Tagiyeva N, Aucott L, et al. Changing trends in asthma in 9-12 year olds between 1964
and 2009. Arch Dis Child 2011;96:227-31.
8. Sennhauser FH, Braun-Fahrländer C, Wildhaber JH. The burden of asthma in children: a
European perspective. Paediatr Respir Rev 2005;6:2-7.
9. Clavenna A, Rossi E, Berti A, et al; ARNO Working Group. Inappropriate use of anti-asthmatic
drugs in the Italian paediatric population. Eur J Clin Pharmacol 2003;59:565-9.
10. Bianchi M, Clavenna A, Bonati M. Inter-country variations in anti-asthmatic drug prescriptions
for children. Systematic review of studies published during the 2000-2009 period. Eur J Clin
Pharmacol 2010;66:929-36.
11. Strachan DP. Family size, infection and atopy: the first decade of the ‘hygiene hypothesis’.
Thorax 2000;55 (Suppl 1):S2–S10.
12. Thavagnanam S, Fleming J, Bromley A, et al. A meta-analysis of the association between
caesarean section and childhood asthma. Clin Exp Allergy 2008;38:629-33.
13. Zuidgeest MG, van Dijk L, Smit HA, et al. Prescription of respiratory medications without an
asthma diagnosis in children: a population based study. BMC Health Serv Res 2008;8:16.

122
9.7 Visual Impairment
Visual impairment is a condition that prevents normal vision in both eyes.
f
Many children
have poor eyesight, which can be corrected by wearing glasses or contact lenses. However,
there are a number of serious problems that cannot be corrected, such as those caused by
retinopathy of prematurity, cancer of the retina (retinoblastoma) and a variety of congenital
syndromes, such as Usher’s syndrome. This chapter focuses on the most serious causes of
visual impairment.
Main Sources of Information
The main sources of information are articles reporting data from national registries for blind
people, often showing data on low vision, and articles found via web-based databases. The
State of the World Sight’s report produced by WHO and the International Agency for the
Prevention of Blindness (last available, 2005) is the most reliable global source of data.
1
Size of the Problem
Available data suggest that globally there may be a ten-fold difference in the prevalence of
childhood blindness between the wealthiest and the poorest countries in the world, ranging
from as low as 0.1 per 1,000 children aged 0-15 years within the former, to 1.1 per 1,000
within the latter.
1
Prevalence of childhood blindness in Europe is between 0.1 and 0.41 per
1,000 children 0-15 years of age, with wide variations across countries (Sweden 0.11 per
1,000 children 0-19 years of age, Denmark 0.41, Finland 0.15, Iceland 0.19, and Norway
0.15 per 1,000 children aged 0-15 years).
2
A study carried out in the United Kingdom on a
large sample of visual impaired children, identified through national active surveillance
schemes in ophthalmology and paediatrics, reported that the annual incidence was highest in
the first year of life, 4.0 per 10,000 infants, with a cumulative incidence by 16 years of age of
5.9 per 10,000.
3
There are no reliable data on the prevalence of low vision among children. It
is expected to be several times more frequent than blindness.
Causes and Risk Factors
These can be classified as:
• Hereditary (e.g. genetic diseases, chromosomal abnormalities);
• Acquired during pregnancy (e.g. congenital cataract due to rubella, toxoplasmic
macular retinochoroiditis);
f
Visual impairment includes blindness and low vision. Blindness is defined as visual acuity, or
clearness of vision, of less than 3/60 with best possible correction (ICD10 categories 1 and 2). Low or
poor vision is defined as visual acuity of less than 6/18 but equal or superior to 3/60 (ICD10 categories
3, 4 and 5).
Key Messages
• The prevalence of childhood blindness in Europe is between 0.1 and 0.41 per 1,000
children between 0 and 15 years of age, with wide variations in prevalence mainly
due to variable quality of data across countries. Prevalence of low or poor vision is
unknown, but it can be estimated as several times higher.
• Visual impairment may be brought about by a variety of causes, including
retinopathy of prematurity, which is the leading cause in high-income countries, as
well as congenital anomalies, cancer, myopia, amblyopia and injury.
• Prevention, early detection, treatment and rehabilitation may substantially reduce
both the prevalence and the severity of visual impairment problems.
• Technological developments may substantially improve the prospects of children
with severe visual impairment, and should be made available to all children.

123
• Acquired in the perinatal period (e.g. retinopathy of prematurity, birth injury, neonatal
conjunctivitis);
• Acquired in childhood (e.g. vitamin A deficiency disorders, measles, eye infection and
trauma).
Retinal disorders, optic atrophy, and injury of the higher visual pathways are the main
anatomic causes of visual loss in children. In the United Kingdom, of 439 newly diagnosed
children, 336 (77%) had additional non-ophthalmic disorders or impairments: cortical visual
impairment, retinal disorders, and disorders of the optic nerve affected 48%, 29%, and 28%
of cases, respectively.
3
About 10% of these children died within a year of diagnosis, 77% in
the first year of life, because they had associated non-ophthalmic disorders causing death.
Prenatal causal factors affected 268 children (61%), with perinatal or neonatal and childhood
factors each affecting 77 children (18%). Incidence and causes varied with the presence of
non-ophthalmic impairments or disorders, birth weight, and origin. At least 75% of children
had disorders that were neither potentially preventable nor treatable, with current knowledge.
The most frequent causes of severe visual impairment in European countries are retinal
affections (particularly retinal dystrophies), congenital cataract, optic atrophy, retinopathy of
prematurity and congenital anomalies, often within multi-organ complex inherited and
congenital syndromes. Due to variability in the incidence of risk factors and the
implementation of preventive interventions, there is some variation of the most frequent
causes across Europe (Table 9.7.1).
2,3
Table 9.7.1. Main causes of severe visual impairment in children in some European countries
Scandinavia United Kingdom Hungary Czech Republic
1. Cortical visual
impairment
2. Optic atrophy
3. Congenital
anomalies
4. Retinal
dystrophies
5. Retinopathy of
prematurity
1. Cortical visual
impairment
2. Retinal
dystrophies
3. Optic atrophy
4. Congenital
cataract
5. Congenital ocular
anomalies
1. Congenital
cataract
2. Congenital
anomalies
3. Myopia
4. Retinopathy of
prematurity
5. Retinal
degeneration
1. Retinopathy of
prematurity
2. Congenital
anomalies
3. Hereditary
disorders
4. Congenital
cataract
5. Congenital
glaucoma
It is known that up to the age of 2 years, LBW infants or infants requiring special care in the
neonatal period have a greater risk of visual and ocular defects compared to the rest of the
population. There are a number of interlinked risk factors that are associated with retinopathy
of prematurity: IUGR and prematurity, high levels of supplemental oxygen, mechanical
ventilation, intraventricular haemorrhage, and maternal factors including heavy smoking,
diabetes, and pre-eclampsia.
Refractive errors that affect a large proportion of the population, including children, can be
easily diagnosed, measured and corrected with spectacles or other corrections to attain
normal vision. However, if they are not corrected during the critical period of visual pathway
development (from birth to 8-10 years of age), or if correction is inadequate, refractive errors
can become a major cause of low vision and even blindness. In the 5-15 years age group,
lack of correction of refractive errors is mainly due to the lack of screening and the availability
and affordability of refractive corrections.
Challenges
Since most European countries face an increase in the number of newborn infants of
extremely LBW, and given the fact that improved perinatal services are leading to increased
survival of these infants, it is crucial that prevention of retinopathy of prematurity be

124
strengthened by appropriate perinatal care, including appropriate use of oxygen, and close
monitoring of early signs through close collaboration between neonatologists and child
opthalmologists.
1
Vision screening is to be recommended from the very first weeks of life until school age in all
children.
4,5
All premature children are at higher risk of other eye and eyesight complications.
Thus, eye examinations every six months are recommended for all infants born with a
gestational age of under 32 weeks or with a birth weight of less than 1500 g. About 20% of
premature infants without retinopathy of prematurity will still develop vision problems,
particularly myopia, which will require prescription of eye glasses, and strabismus. Primary
and secondary prevention of all causes of visual impairment in children is particularly vital in
pockets of underprivileged populations that are at higher risk of perinatal complications and
may have limited access to vision screening and eye care.
Most children with visual impairments cope perfectly well in mainstream schools, with
appropriate glasses, but some have problems that go undetected, and others have
significant difficulties that require specialist help. For these children, without proper
assistance, education can be a difficult process. A specific challenge for these children is
having access to teaching and learning aids, including adaptive equipment, such as
electronic whiteboards, wrist watches and wallets that talk, which have been developed to be
used by people with visual impairments; there are also electronic devices that expand
mobility. The visually impaired child should also have access to texts in Braille, tape
recorders, and other learning aids; teachers and educational institutions should be informed
and supportive.
6,7
Advances in technology have made learning opportunities for the visually
impaired, more readily available. The technology will hopefully continue to improve and will
become less expensive, so that every child with a visual impairment will be provided with
opportunities to succeed in school.
The Right to Sight, the global initiative of the International Agency for the Prevention of
Blindness and of WHO, with its international membership of NGOs, professional bodies,
national associations, academic institutions and caring corporations, provides information
and support to the development of national policies.
8
References
1. WHO/International Agency for the Prevention of Blindness. The State of the World Sight’s 2005.
WHO, Geneva, 2005.
2. Kocur I, Resnikoff S. Visual impairment and blindness in Europe and their prevention. Br J
Ophtalmol 2002;86:716-2.
3. Rahi JS. Childhood blindness: a UK epidemiological perspective. Eye 2007;21:1249-53.
4. Powell C, Wedner S, Hatt S. Vision screening for correctable visual acuity deficits in school-age
children and adolescents. Cochrane Database of Systematic Reviews 2005, Issue 1.
5. Powell C, Porooshani H, Bohorquez MC, et al. Screening for amblyopia in childhood. Cochrane
Database of Systematic Reviews 2005, Issue 3.
6. Teaching Expertise. Supporting children with visual impairments.
http://www.teachingexpertise.com/e-bulletins/supporting-the-child-with-visual-impairment-1951
(accessed 14 December, 2010).
7. http://www.helium.com/knowledge/126731-teaching-children-with-visual-impairments (accessed
14 December, 2010).
8. Agency for the Prevention of Blindness/WHO. The Right to Sight www.vision2020.org.

125
9.8 Hearing Loss
Hearing loss refers to complete and partial loss of the ability to hear.
g
Transitory hearing loss
is quite common in children as a consequence of acute or chronic otitis. Depending on the
part of the hearing system involved, hearing loss is classified as conductive, if the problem is
in the middle ear, or sensorineural, when the problem is in the inner ear, or mixed, when the
hearing loss involves both. This chapter focuses mainly on sensorineural hearing loss
(SNHL), since it is usually severe, in most instances congenital or acquired very early in life,
and consequently leads to serious problems in speech and language development if not
recognised and treated.
Main Sources of Information
Information on the epidemiology of hearing loss was collected in review articles, national
registers on deaf people and national surveys. While information on generic hearing loss in
children is heterogeneous, information on prevalence of profound hearing loss tends to be
rather uniform across European countries.
Size of the Problem
The proportion of children suffering from any hearing loss in Europe is unknown. Surveys
carried out in European countries indicate that between 3% and 7% of all children are
suffering from some kind of hearing loss, depending on the survey method, the definition
used, and the age group considered. For example, data from Germany and Finland show
that 7% of German and 8% of Finnish schoolchildren aged between 6 and 7 years, suffer
from a loss of 20 dB or more in at least one frequency.
1
Data on severe or profound hearing
loss, which is much less frequent but more easily identifiable, show less variability. In the
United Kingdom, the Royal National Institute for Deaf People estimates that about 20,000 of
British children aged 0 to 15 years suffer from moderately severe to profound hearing loss.
2
Of these, 8,000 are severely or profoundly deaf, corresponding to 2 per 1,000 and 0.8 per
1,000 within the population under 5 years of age, respectively, while 840 children with
moderate to profound deafness are born every year (1.2 per 1,000). The prevalence of
confirmed permanent childhood hearing impairment (loss of more than 40 dB) in the United
Kingdom has been estimated to rise with age to 1.33 per 1,000 live births among children
aged 5 years or older, and to 1.65 per 1,000 live births (even as high as 2.05 per 1,000 live
g
Severity of hearing loss is graded as mild (20–40 dB), moderate (41–55 dB), moderately severe (56–
70 dB), severe (71–90 dB), or profound (90 dB). And the frequency of hearing loss is designated as
low (500 Hz), middle (501–2000 Hz), or high (2000 Hz). A child’s hearing acuity is classed as normal if
it is within 20 dB of these thresholds.
Key Messages
• European national surveys report that between 1 and 2 in 1,000 children suffer from
severe, usually congenital, hearing loss, while many more suffer from mild to
moderate, usually acquired, hearing loss.
• Hearing loss, when severe and present at birth or acquired in the early years, leads
to serious problems in speech and language development if not recognised and
treated.
• Identification of hearing loss through neonatal screening, now implemented in most
European countries, and hearing screening of older infants and children, can
prevent or reduce most consequences of severe and profound hearing loss.
• Current rehabilitation options focus on hearing aids and cochlear implants (an
electronic medical device that replaces the function of the damaged inner ear, also
known as ‘bionic ear’), and on informed choices about communication options.
• Advances in human genetics and technology have improved our ability to identify
carriers of inherited hearing loss and to provide genetic counselling.

126
births) among children of 9 years of age and older.
3
In Estonia, between 1985 and 1990,
0.17% of children were born with permanent childhood hearing impairment, according to the
first study on this issue to be published in that country.
4
Children with untreated hearing loss tend to experience problems with speech development,
language, and communication skills, particularly if severe hearing loss occurs at birth, or
before speech and language is acquired. This may lead to emotional difficulties, learning and
behavioural problems in school. However, with early identification and treatment, the impact
can be reduced. During the past three to four decades, as a result of improved neonatal care
and the widespread implementation of immunisation programmes, the incidence of acquired
SNHL in children living in more developed countries has decreased, with a relative increase
in the proportion of inherited forms of SNHL.
1
Causes and Risk Factors
Hearing loss can be congenital or acquired. Most of the congenital hearing loss is
sensorineural and include hereditary hearing loss and hearing loss due to other factors
present either in the womb or at the time of birth. Genetic factors are now thought to cause
more than 50% of all congenital hearing loss in children.
1
Allele variants of a gene called
GJB2 account for roughly half of hereditary cases of SNHL in many European countries.
5
Inherited SNHL generally appears as an isolated physical finding but about 30% of cases are
associated with other disorders, such as Pendred's, Ushers's or Alport's syndromes. Causes
of non-genetic SNHL are women's exposure to infectious pathogens during pregnancy.
Some of these (toxoplasmosis, rubella, cytomegalovirus, and herpes simplex) remain
important causes not only of acquired SNHL, but also of visual loss and neurological
dysfunction. In developed countries, where women are vaccinated against rubella, congenital
cytomegalovirus infection is generally recognised as the most frequent cause of acquired
hearing loss in neonates.
6
Acquired SNHL in infants and children is most commonly caused
by bacterial meningitis, which accounts for about 6% of all cases of SNHL in children.
7
Ototoxic drugs during the neonatal period may also cause SNHL, while trauma and brain
tumour are less common causes and are usually associated with unilateral hearing loss. An
increasingly important risk factor for late-onset hearing loss among school-aged children is
noise-induced hearing loss from toys and personal listening devices. Besides exposure to
the above mentioned factors, the most common risk factors for SNHL in children are a family
history of hearing loss, very LBW and severe prematurity. The most common cause of
intermittent mild to moderate hearing loss in infants and young children is the conductive
hearing loss caused by acute otitis media or otitis media with effusion.
8
Children whose severe or profound hearing loss is not identified until one year of age may
suffer from permanent impairment of speech, language, and thus learning. Moderate hearing
loss may also interfere with the normal development of speech and language and produce a
distinct disadvantage in development and learning.
Challenges
Primary prevention, early detection, treatment and rehabilitation all play an important part in
reducing the number of children suffering the consequences of hearing loss.
Primary prevention of congenital deafness includes rubella immunisation, appropriate use of
drugs in the neonatal period, and interventions to prevent prematurity. Vaccination against
Haemophilus influenzae type b and several serotypes of Streptococcus pneumoniae,
currently implemented in several European countries, are mainly aimed at preventing severe
diseases, such as meningitis and sepsis, yet they cause the adjunctive benefit of reducing
the incidence of hearing loss secondary to bacterial meningitis and to acute and chronic otitis
media. In countries where congenital cytomegalovirus has supplanted congenital rubella
syndrome as the commonest cause of acquired congenital SNHL in children, the
development of an effective vaccine may represent a significant advance. Efforts should also

127
be directed to increase awareness and control of the exposure to personal listening devices,
particularly if producing sound in excess of 100 dB, among older children and adolescents.
The most important preventive intervention for the potentially severe consequences of
severe hearing loss is the early detection of SNHL through universal neonatal hearing
screening, which most European countries have introduced and are scaling up. Newborn
infant hearing screening programmes are designed to identify all children born with moderate
to profound permanent bilateral deafness occurring shortly after birth. The most valid
screening system is the Automated Otoacoustic Emission.
1,9
As a result of these
programmes, the average age of detection of children with SNHL has fallen from 12–18
months to 6 months or younger. Results suggest that these programmes facilitate normal
language achievement for more children with SNHL, thus offering cost savings in the long
term compared with either selective screening or no screening at all.
10
Screening programmes must be associated with early treatment and rehabilitation, which
includes hearing aids and cochlear implants, the latter being the foremost treatment for
children with severe to profound SNHL detected at birth, and close follow-up of language
development with language rehabilitation if necessary.
11,12
Depending on timeliness of
diagnosis, severity of hearing loss and parental choice, decisions are to be made on
communication options, including auditory verbal training, oral training, lip reading, and
various recognised sign languages.
13
The challenge is not only to extend hearing screening programmes to all children but to
promote and develop family-friendly integrated services which support effective early
intervention for deaf children. The challenge is also to empower parents to make informed
choices for their child throughout the entire newborn hearing care pathway.
9,12
Focused
genetic counselling and health education might lead to a decrease in the prevalence of
inherited SNHL. The recent identification of simple methods used to recognise GJB2 carriers,
opens the way to identification of carriers and consequent genetic counselling.
14
Detection of children with mild or unilateral or previously undetected SNHL, or with acquired
hearing loss is also important and is based on well-child, periodic consultation programmes
carried out by paediatricians, family doctors or community nurses/health visitors in all
European countries. Given current yields from universal neonatal hearing screening, it has
been predicted that an additional 50% to 90% of children remain to be detected in the
postnatal years.
3
Children suspected as suffering from learning disability, autism spectrum
disorders or pervasive developmental disorder should always be tested for SNHL.
Research to evaluate the cost/benefit and effectiveness of various preventive, treatment and
rehabilitation approaches, as well as Europe-wide introduction of uniform surveillance
systems and biotechnological developments, represent the key priorities to reduce the
burden of hearing loss in children.
References
1. Smith RJK, Bale JF, White KR. Sensorineural hearing loss in children. Lancet 2005;365:879-90.
2. Royal National Institute for Deaf People,
http://www.rnid.org.uk/information_resources/aboutdeafness/statistics/statistics.htm#baby
(accessed 22 December 2010).
3. Fortnum H, Summerfield Q, Marshall D, et al. Prevalence of permanent childhood hearing
impairment in the United Kingdom and implications for universal neonatal hearing screening:
questionnaire based ascertainment study. BMJ 2001;323:536-42.
4. Uus K, Davis AC. Epidemiology of permanent childhood hearing impairment in Estonia, 1985-
1990. Audiology 2000;39:192-7.
5. Noben-Trauth K, Zheng QY, Johnson KR. Association of cadherin23 with polygenic inheritance
and genetic modification of sensorineural hearing loss. Nature Genetics 2003;35:21–3.
6. Rivers LB, Boppana SB, Fowler KB, et al. Predictors of hearing loss in children with
symptomatic congenital cytomegalovirus infection. Paediatrics 2002;110:762–7.

128
7. Dahle AJ, Fowler KB, Wright JD, et al. Hearing loss at school age in survivors of bacterial
meningitis: assessment, incidence, and prediction. Paediatrics 2003;112:1049-53.
8. Rovers MM, Schilder AGM, Zielhuis GA, et al. Otitis media. Lancet 2004;363:465–73
9. UK National Screening Committee. Screening programmes: antenatal and newborn, 2010,
http://hearing.screening.nhs.uk/ (accessed 22 December 2010).
10. Keren R, Helfand M, Homer C, et al. Projected cost-effectiveness of statewide universal
newborn hearing screening. Pediatrics 2002;110:855-64.
11. Arts HA, Garber A, Zwolan TA. Cochlear implants in young children. Otolaryngol Clin North Am
2002;35:925-43.
12. Russ SA, Hanna D, DesGeorges J, et al. Improving follow-up to newborn hearing screening: a
learning-collaborative experience. Pediatrics 2010;126:S59-69.
13. Li Y, Bain L, Steinberg AG. Parental decision-making and the choice of communication modality
for the child who is deaf. Arch Pediatr Adolesc Med 2003;157:162-8.
14. Guastalla P, Gasparini P, Guerci VI, et al. Identification of epidermal thickening in GJB2 carriers
with epidermal ultrasound. Radiology 2009;251:280-6.

129
10. Communicable Diseases
Communicable diseases are illnesses caused by microbial agents capable of spreading
among human populations, through direct or indirect transmission. They may be classified
using different criteria: the causative agent (e.g. viruses, bacteria, fungi), the mode of
transmission (e.g. food borne, zoonosis), the organ involved (e.g. respiratory system, liver),
and whether they are vaccine preventable or not. The broadness of the topic does not allow
a complete coverage in this report. Though communicable diseases are very frequent in
children and are responsible for a large proportion of the overall burden of child health care,
this chapter focuses only on communicable diseases of greater public health importance.
Tuberculosis and HIV/AIDS are discussed in two separate sections due to their global
importance and specific control strategies.
10.1 Communicable Diseases of Public Health Importance
Main Sources of Information
Data have been drawn from ECDC (European Centre for Disease Prevention and Control,
www.ecdc.europa.eu/en/Pages/home.aspx) annual reports on diseases for which notification
is mandatory in EU and EFTA countries. Data routinely collected by surveillance systems in
Member States are uploaded into the European Surveillance System (TESSy) and are
subsequently made available in ECDC annual reports. Further information has been
retrieved from other surveillance networks (EUVACNET, EUIBIS, DIPNET) not yet fully
integrated into TESSy. Relevant data from cohort studies, cross sectional surveys and
records from hospital and primary health care facilities were also used.
As far as quality and completeness of data are concerned, surveillance systems relying on
physicians’ notification, even if widely available, tend to underestimate the real disease
incidence in a way that may vary across countries, making any comparison problematic in
time. The burden of communicable diseases would be better described by incidence data
drawn from large community cohort studies or by cross sectional surveys. Due to their high
cost, these studies are scarce and generally insufficient at identifying trends or variations
across countries. Data on hospital admissions can be useful to calculate the incidence of
severe conditions (e.g. invasive pneumococcal disease). Yet, they are generally unreliable
for less severe conditions for which decisions on hospital admission depend on national or
local policies. Finally, the use of non-standard case definitions represents another threat to
data quality.
Key Messages
• Overall, the incidence of most communicable diseases in Europe is decreasing.
There are a few exceptions (campylobacter, yersinia, hepatitis C), while for some
diseases (e.g. influenza) data are insufficient to be able to work out reliable trends.
• Some vaccine preventable diseases (e.g. measles) are still endemic in some
countries and population groups.
• The coverage of immunisation programmes has been improving and is on average
very high, but disparities still exist among countries and population groups. New
vaccines (e.g. pneumococcal, rotavirus) have been recently introduced in some but
not all countries and their effectiveness is still under scrutiny.
• Surveillance systems to monitor vaccine preventable diseases and immunisation
coverage are in place and rapidly improving. The surveillance of adverse events
following immunisation is still weak.
• Antimicrobial resistance of some pathogens is increasing, possibly representing the
single biggest challenge facing Europe in the area of infectious diseases.

130
Size of the Problem
Figure 10.1 shows the notification rates of some communicable diseases for which
notification is mandatory in EU and EFTA countries; only diseases with a notified incidence
higher than 1 per 100,000 children are included, and not all the countries report on all
diseases.
1
The ECDC reports show that over the past 10 years the notification rates of most
communicable diseases is stable or decreasing. There are some exceptions (e.g.
campylobacter, yersinia, hepatitis C), while for some diseases (e.g. influenza) data are still
insufficient to work out reliable trends.
Figure 10.1. Notification rates of some communicable disease reported in 2008.
0 100 200 300 400 500 600
VTEC/STEC
IPD
Rubella
IMD
Measles
Shigellosis
Hepatitis A
Cryptosporidiosis
Yersiniosis
Mumps
Pertussis
Campylobacteriosis
Salmonellosis
Giardiasis
notified cases per 100,000 children
0-4 years 5-14 years
Acute Respiratory Infections
Acute infections of the upper and lower respiratory tracts include a large number of different
diseases such as common cold, otitis, pharyngitis, bronchitis, bronchiolitis and pneumonia.
Overall, these infections represent the highest burden for health care services and families.
Some of these infections are self-limiting conditions of lesser public health importance. This
section will deal only with acute otitis media; pneumonia caused by Pneumococcus and
Haemophilus influenzae will be dealt with under vaccine preventable diseases.
Pneumococcus and Haemophilus influenzae are the most common causes of acute otitis
media. The peak incidence of this disease is between 6 and 11 months of age. By the age of
three, 50-85% of children have had at least one episode. Recurrent acute otitis media (3
episodes or more) is also common, affecting 10-20% of children up to and including 12
months olds. Nearly 40% of older children eventually have 6 or more total episodes.
2
Spontaneous resolution is fortunately the most common outcome of acute otitis media.
Trends are difficult to estimate due to changes in health care systems, access to and use of
health care.

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Acute Gastroenteritis
Acute gastroenteritis is a common disease caused by a variety of pathogens, rotavirus being
the most frequent (see below under vaccine preventable diseases). It is associated with a
high use of health care services for children, second only to respiratory infections. In Europe,
the incidence is stable, with no appreciable changes over the past two decades, and
mortality is very low. A study conducted in Ireland in 2003 found an annual incidence of
community-acquired gastroenteritis of 0.6 episodes per person per year; the incidence was
higher among children and health services were contacted by 27% of those affected.
3
Another study from Germany found that 13.8% of children under 5 years of age had been
seeking medical care for acute gastroenteritis in 2004.
4
Vaccine-Preventable Diseases
In the pre-vaccination era, about 30,000 children were affected each year by poliomyelitis in
the WHO European Region. Since the introduction of vaccines, in the 1960s, the incidence
dropped progressively and in 2002, the region was certified as polio-free. The last outbreak
had affected the Netherlands in 1992–93, when 79 people were infected in a community that
refused vaccination for religious reasons. In 2010, the European Region of WHO
experienced the first import of wild poliomyelitis since 2002, the previous cases being in 2001
with three children belonging to a Roma community in Bulgaria. The wild poliovirus was
imported from India and caused an outbreak of 458 laboratory-confirmed cases in Tajikistan,
including 27 deaths. The outbreak propagated rapidly to neighbouring countries: the Russian
Federation reported 14 cases, Turkmenistan 3, and Kazakhstan 1 case.
5
Should the
outbreak move west, nearby European countries may need to intensify surveillance.
Tetanus and diphtheria have been under control in Europe since the introduction of
vaccines in the 1960s. Between 100 and 200 tetanus cases are still reported every year in
EU and EFTA countries, the majority of them in non-vaccinated adults and elderly people.
1
Since 1995, most diphtheria cases have occurred in the Baltic States, and have tended to be
connected with the large outbreak that involved the Russian Federation in the 1990s.
Currently, Latvia is still reporting a small number of cases, and sporadic imported cases are
notified by other EU countries.
The availability of acellular vaccines has considerably improved the control of pertussis in
Europe. In 2008, 18,807 confirmed cases (out of 20,442 reported) were reported by 28 EU
and EFTA countries. The overall notification rate was 5.28 per 100,000 people, unchanged
over the previous two years.
1
The most affected group are children between 5 and 14 years
of age, with a notification rate of over 14 per 100,000, followed by infants not yet fully
immunised. The high rate in older children and adolescents is probably due to the waning of
vaccine protection from five years after the third dose. The results of long-term surveillance
show a dramatic drop of laboratory-confirmed cases as a result of vaccination with acellular
pertussis vaccine, and the need for a booster dose at 5-7 years of age.
6
Although the measles vaccine has been part of routine national childhood vaccination
programmes throughout Europe for at least 20 years, the disease is still endemic in many
countries.
1
Between 2006 and 2007 several countries reported high numbers of cases and
outbreaks: 85% of 12,132 recorded cases in 32 EU, EFTA and candidate countries came
from 5 countries (Italy, Germany, Romania, United Kingdom and Switzerland). In the same
two years, 6 measles-related deaths were recorded in these countries: 3 in Romania, 2 in
Germany, 1 in the United Kingdom.
7
The largest number of cases in 2006 were reported from
Romania (39% of the total) and Germany (28%), and the highest incidence rates were in
Greece and Romania (4.7 and 14.8 per 100,000 people, respectively). In 2007, the overall
incidence fell significantly compared with the previous year. The United Kingdom and
Switzerland reported the largest number of cases and the highest incidence (1.6 and 13.8
per 100,000 people, respectively). About a fifth of these cases were in people aged 20 years
or older, but most cases were in unvaccinated or incompletely vaccinated children. As

132
expected, the number of reported cases of measles fluctuates from one year to another.
Increased measles transmission continued to be recorded from 2008 to 2010, particularly in
Austria, Belgium, Cyprus, France, Ireland, Italy, Poland, Spain, the United Kingdom and
Switzerland,
1
with annual incidence rates being quite far from the elimination goal set by
WHO at less than 1 case per 1,000,000 people. Other outbreaks have been described in
specific groups such as Roma and Sinti communities in Italy, Roma and immigrant families in
Greece, orthodox Jewish communities in Belgium and the United Kingdom, and Traveller
communities in the United Kingdom and Norway. The recent outbreak in Bulgaria is
paradigmatic. Since its onset in April 2009, over 23,000 measles cases and 24 deaths have
been reported; 90% of these cases occurred within the Roma community, the majority (over
60%) in children younger than 15 years old, 30% of which were not fully immunised.
8
A total of 19,640 cases of mumps (9,940 confirmed) were reported in 2008 by 27 EU and
EFTA countries, with an overall notification rate of 2.79 per 100,000 people, slightly lower
than the rate in the previous 2 years.
1
Only Iceland reported zero cases, the last outbreak in
that country having been reported in 2005 and 2006. The highest notification rates were
observed in Ireland, Bulgaria, Romania, Luxembourg and the United Kingdom. The most
affected groups are children between 0 and 4 and 5 and 14 years of age, with notification
rates ranging from 10 to 17 per 100,000. About 10% of notified cases were admitted to
hospital and 1% developed complications. It is however impossible to generalise as not all
countries notified hospital admissions and complications.
In 2008, 1,921 rubella cases were confirmed out of the 21,307 cases reported from 26 EU
and EFTA countries, showing a slight decrease compared to previous years.
1
Children aged
0–4 years are the age group with the highest notification rate, 9.34 cases per 100,000
children. Among those cases for which information is available, the majority, over 80%,
occurred in unvaccinated children and adolescents. Rubella is a mild disease in these age
groups. For public health purposes, only rubella infection during pregnancy represents a
problem due to severe consequences on the development of the foetus.
In the early 1990s, hepatitis B infection showed different patterns of endemicity in Europe,
from very low (less than 0.5%) to medium (2–7%) prevalence rates of chronic carriers. After
the introduction of vaccination programmes, the rates in children fell considerably. In 2008,
there were 6,369 confirmed cases of hepatitis B virus infection reported by 28 EU and EFTA
countries, a rate of 1.29 per 100,000 people.
1
Only a small minority of these cases occurred
in children 0-4 and 5-14 years old, with rates lower than 0.2 per 100,000.
The different serotypes of Hemophilus influenzae, of which type B is the most important
and for which a vaccine is available, cause several diseases ranging from non-severe acute
upper respiratory infections to severe meningitis and deadly invasive septicaemias. Data on
the incidence of all infections caused by Haemophilus influenzae are somewhat patchy. In
2008, a total of 2,122 confirmed cases of invasive disease (all serotypes) were reported by
24 EU and EFTA countries, for a notification rate of 0.46 per 100,000 people, similar to the
one reported in previous years.
1
Young children are the most affected; children under 5 years
of age have reported rates that may double those reported in the general population. In
2006, Estonia reported the highest incidence, followed by Ireland. In 2008, however, the
highest incidence was reported by Sweden and Norway. These rankings have to be taken
cautiously as notification policies change across countries and over time. The number of
cases of invasive disease has been decreasing progressively since the introduction of
vaccination. For example, in the United Kingdom, the implementation of an accelerated
vaccination programme since 1992 led to a virtual elimination of cases, attributed to a strong
herd immunity effect. However, since 1999, an increase has been observed that led to the
introduction of a booster vaccine dose to re-establish the herd immunity and control the
disease.
9
There is a wide heterogeneity in the surveillance of invasive pneumococcal disease in the
EU, particularly as far as surveillance systems, coverage and case definition are concerned.

133
In some countries there is no surveillance at all. Data should therefore be compared with
caution. In 2008, 14,883 cases of invasive pneumococcal disease were reported by 24 EU
and EFTA countries, of which 14,757 were confirmed.
1
The most affected age groups were
people aged 64 years and over, followed by children aged under 5 years and under, with a
notification rate of 6.96 cases per 100,000. The overall notification rates varied widely across
countries as a consequence of the surveillance problems discussed above. The highest rates
were reported by Sweden, Norway, Belgium and Finland. Compared with previous years,
there were increases in Belgium, Finland and Slovenia, most likely due to improvements in
the effectiveness of surveillance systems. A systematic review using data from studies
published between 1980 and 2003, before the introduction of the vaccine, estimated an
incidence rate of invasive pneumococcal disease of 11–93 cases per 100,000 among
Western European children under the age of 2 years.
10
Incidence has dropped to less than
10 per 100,000 after the introduction of vaccination. There are concerns regarding the
possibility that serotypes covered may be replaced by serotypes not covered by current
vaccines, as already observed in the United States.
11
Rotavirus accounts for about 40% of cases of acute gastroenteritis in Europe.
12
The
incidence is highest in children aged 6 to 24 months. Mortality is low, but the disease is
responsible for a high number of outpatient visits and hospital admissions. In 2006, a review
of the literature estimated that in Europe there were more than 70,000 hospital admissions
per year, with a considerable economic burden for families and health systems; about 20% of
these admissions may have been due to hospital acquired infections.
13
In the same year,
another review estimated 3.6 million episodes of disease per year in children under 5 years
of age, with 231 deaths, 87,000 admissions to hospital and almost 700,000 outpatient
visits.
14
A recent ECDC report highlights the lack of high-quality, European-specific data on
influenza.
15
This is not surprising as influenza surveillance has historically focused on the
collection of viral data for vaccine strain selection, with limited concern for the epidemiology
of the disease. As a result, large gaps remain in our understanding of its burden, trends and
variation in severity across countries. An analysis of data drawn from surveillance networks
in four EU countries (Italy, Netherlands, Spain and England) for the period 2002–2008
indicates that during a winter of average temperatures, 0.3% to 9.8% of children aged 0-14
years consulted a physician with regard to influenza, with the A(H3N2) virus playing the most
significant role. With the exception of Spain, these rates were higher in children aged 0–4
years.
16
Approximately in the same period, among children living in the Netherlands, Spain
and England, the annual hospital admission rate due to influenza varied between 5 and 21
per 100,000 children 0-4 years of age and 7 to 46 per 100,000 infants less than 1 year.
17
Causes and Risk Factors
The classic paradigm of infectious disease transmission depicts the microbial agent, the
human host and the environment as each one representing a corner of a triangle.
Transmission of a pathogen from one host to another depends on two processes: frequency
of contacts and infectivity, i.e. the probability of infection given a contact. The first quantifies
the interaction between hosts or between a host and the environment, vectors included, and
is generally determined by the host behaviour (contacts with animals, personal hygiene) and
properties of the environment (sanitation, housing). The second, infectivity, is a function of
the virulence of the pathogen and the immune status of the host (vaccination, nutrition).
Finally, the burden of communicable diseases reflects not only the level of transmission but
also the severity of the disease, which may be influenced by the nutritional state and
genetics of the host, as well as by the availability of effective health care services. The
majority of these proximal determinants may influence each other mutually and may also be
influenced, through multiple mechanisms, by broader and more distal environmental, social
and economic determinants.

134
Investigating such complexity, requires the identification of subpopulations at higher risk of
communicable diseases across Europe and the explanation of the specific chain of
determinants active in these subpopulations. Since national statistics are average values,
generally unable to detect intra-national variation, key information comes mainly from
research projects carried out among vulnerable groups. They indicate that poor educational
performance, low-employment class, or recent change in migration status are associated
with increased frequency and severity of several communicable diseases all over Europe.
The recent measles outbreak in Bulgaria is paradigmatic of this. A number of factors
converged to precipitate this epidemic: socio-economic and health system reform, social
marginalisation, crowded living conditions and poor access to preventive and curative health
service among Roma communities. These socio-economic conditions constitute a fertile
ground for outbreaks of measles and other communicable diseases, including the recent
poliomyelitis outbreak in Tajikistan or the reported foci of tuberculosis in specific population
groups.
Challenges
Surveillance of communicable diseases in Europe is supported mainly by ECDC and by
WHO/EURO. In the last decade, the EC has listed the diseases that are to be notified at EU
level, has delineated rules and criteria to set up surveillance networks to monitor such
diseases, and has promoted coordination between the Member States, as well as between
national and international agencies. The coordinating role of ECDC is gradually emerging
and surveillance systems are progressively improving.
The strategy for the control of communicable diseases among children in Europe
encompasses a range of preventive and curative interventions, from food safety to the use of
antibiotics. However, vaccination programmes remain the most cost-effective measure for
the prevention and control of the most important communicable diseases; more than 2.5
million deaths a year are prevented globally as a result of vaccination against diphtheria,
tetanus, pertussis and measles. Several communicable diseases can be effectively
prevented by vaccines and several new vaccines are under development.
In 2007, the VENICE project conducted a survey to collect information on immunisation
programmes in 29 countries (EU27 plus Iceland and Norway) and found that a small group of
vaccines constitute the common basis for vaccination schedules in Member States:
poliomyelitis, DTP (diphtheria, tetanus, pertussis), and MMR (measles, mumps, rubella).
18
The vaccine for Haemophilus influenzae type b (Hib) was offered in almost all countries with
the exception of Romania and Bulgaria, where a discussion over its inclusion in the national
programmes was ongoing. In most countries, universal vaccination against hepatitis B was
also offered, either to the newborn, infant or teenager. However, a number of countries in
Northern Europe have not yet introduced it into their routine programmes because of
controversial results from cost-effectiveness studies. In those countries, strategies focusing
on risk groups have been implemented instead. By 2008, universal childhood vaccination
with the conjugate 7-valent pneumococcal vaccine was part of the national programme in 15
countries. Many countries are currently introducing new 13-valent vaccines. National
authorities have so far delivered recommendations in favour of rotavirus vaccination in very
few countries. Similarly, there is very limited experience of universal chickenpox vaccination.
Finally, until recently, introduction of universal influenza vaccination among healthy children
has not been considered a priority because the risk of influenza-related complications is
generally low in this age group. Following the introduction of a policy on influenza
immunisation in US children in 2004, the issue is currently under debate in EU, with 5
countries recommending it in 2008: Austria, Estonia, Latvia, Slovak Republic and Slovenia.
There is no standardised system in the EU for collecting data on vaccination coverage.
Among the systems used there are administrative methods, surveys and computerised
records systems. In addition, coverage is assessed at different ages and with different
timings in different countries. It is therefore difficult to make comparisons. Based on data

135
collected by WHO/EURO for 2008 through the centralised information system for infectious
diseases, currently the only available consolidated source of data, coverage for DPT3,
Polio3, HIB3, MMR1 and MMR2 was above 90% in all countries except for Austria, Cyprus
(MMR1, MMR2), Denmark (2007), France (HIB3, MMR1, MMR2), Germany (MMR2), Greece
(HIB3, MMR2), Ireland (MMR1), Italy (MMR1), Malta, Poland (Hib3), United Kingdom
(MMR1, MMR2) and Switzerland (MMR1, MMR2). Coverage may have increased
subsequently; in 2009, Denmark, for example, reported values over 90%.
Antimicrobial resistance is a worrying and increasing problem due to the widespread use of
antibiotics at community and hospital levels and to the massive use of antibiotics in animal
breeding. The 2006 annual report of the European Antimicrobial Resistance Surveillance
System (EARSS) describes the developments between 1999 and 2006 and demonstrates
the continuous decline in the effectiveness of antibiotics across Europe.
19
Although this
general trend applies to all countries, Scandinavian countries and the Netherlands are less
affected, and resistance levels are still fairly low. Mediterranean and Eastern European
countries witness the fastest deterioration. The only positive trend occurred in Slovenia and
France where the proportion of methicillin-resistant Staphylococcus aureus has decreased
over the past years due to increased attention paid to infection control in hospitals. In France,
a substantial decrease in antimicrobial prescription was achieved through a significant public
campaign, taking place over the last 3 years. Based on these results, the ECDC identified
antimicrobial resistance as possibly the single biggest challenge facing Europe in the area of
infectious diseases.
10.2 Tuberculosis
Tuberculosis is an infectious bacterial disease caused by Mycobacterium tuberculosis, which
most commonly affects the lungs. It is transmitted from person to person via droplets from
the throat and lungs of people with active lung disease. It is a treatable infection, requiring
usually a 6-month course of combined treatment.
Main Sources of Information
The main sources of information are the databases and reports on tuberculosis of the
surveillance systems based at ECDC and at WHO/EURO. An important challenge for this
surveillance is the use of standard reporting methods and definitions of paediatric cases,
including multidrug-resistant tuberculosis, through integration of laboratory, clinical and
epidemiological data, as the majority of children with the disease are smear sputum negative.
A combination of clinical symptoms, tuberculin skin testing, chest radiography and contact
history, has been used in Europe, in order to define cases of children lacking laboratory
confirmation for surveillance purposes.
Key Messages
• Since 2003, nearly all countries, with some exceptions, experienced a decline or
stabilisation at low levels in paediatric notification rates of tuberculosis suggesting a
decreased or low level of transmission in the general population.
• In countries with low incidence and mortality rates the disease is increasingly
aggregating in the foreign born population, in vulnerable groups, and in risk settings
associated with poverty and lowered immunity.
• Action plans to fight tuberculosis in the EU have to deal with problems such as
multidrug resistance, co-infection with HIV, and concentration of cases in vulnerable
groups.
• To achieve long term control targets, current strategies need to be complemented
with efforts to address risk factors and social determinants.

136
Size of the Problem
In 2008, in EU and EFTA countries, excluding Switzerland, paediatric cases (of children
younger than 15 years of age) represented 4.2% of the total number of reported cases of
tuberculosis.
1
In absolute terms this corresponds to about 3,400 cases, of which about 3,100
were new cases. Approximately 80% of all cases were of national origin, the remaining 20%
being foreign born. Between 1999 and 2008, nearly all countries experienced a decline or
stabilisation at low levels (less than 10 cases per 100,000 children) in notification rates,
suggesting a decreased or a low level of transmission in the general population. Some
countries, however, show higher than average rates. Latvia and Romania report rates
ranging between 15.3 and 32.2 per 100,000; Bulgaria reported an increase from 11.8 to 22.3
per 100,000 between 2000 and 2008, Lithuania from 15.8 to 19.3 per 100,000 between 2007
and 2008. Minor increases were recorded also in Cyprus, Italy, Spain, United Kingdom and
Norway. In France, Italy, Netherlands, Spain and the United Kingdom a higher proportion of
paediatric cases, between 5.6% and 14.4%, was recorded among cases of national origin,
maybe in children born to foreign-born parents.
Children are more likely than adults to develop tuberculosis after infection and are at higher
risk of developing extra-pulmonary and severe disseminated diseases. Tuberculosis in
children is considered a sentinel event that may indicate rising levels of transmission in the
community.
20
Children, however, experience a higher rate of treatment success and a lower
death rate than adults (Figure 10.2.1).
21
Figure 10.2.1 Tuberculosis mortality rates by age group in different regions of Europe. (Source:
Falzon et al, 2008).
The emergence of drug resistant strains poses a serious challenge to the control of
tuberculosis. Data on multidrug resistance in children in Europe are scarce; the best
estimates come from adult and child combined studies. Three countries (Estonia, Latvia and
Lithuania) report that around 20% of children suffer from multidrug resistant tuberculosis, as
opposed to approximately 1% in Western European countries.
22
The burden of tuberculosis follows a strong socio-economic gradient across countries, with
the highest rates among children of low-income families. The same gradient is recorded
within countries and communities, where the poorest have the highest risk. In EU27
countries, and in Norway and Iceland, there is a strong inverse relationship between public

137
wealth index and the rates of tuberculosis. As countries rank higher, the proportion of
foreign-born cases increases (Figure 10.2.2).
23
Important pockets of higher prevalence have
been found in children under 16 years of age in urban areas such as London and Stockholm.
This might be due to a high number of children born in high-prevalence countries.
20
Figure 10.2.2. Public wealth index and tuberculosis prevalence rates in 27 EU countries plus
Norway and Iceland, 2006. (Source: Semenza et al, 2010).
Causes and Risk Factors
Historically, the decline of tuberculosis in Europe preceded the introduction of antimicrobials
and coincided with rapid improvements of the quality of life. Tuberculosis is most commonly
acquired following inhalation of bacteria in droplets produced by a person with pulmonary
disease. Factors lowering the immune response increase the chances of getting the disease
following infection. Proximal risk factors include people living or working in high-prevalence
environments, such as inmates, health workers and prisoners, particularly if these
environments are overcrowded or poorly ventilated, since they have an increased exposure
to infectious droplets. Additionally, proximal risk factors also include HIV infection,
malnutrition, tobacco smoke, indoor air pollution, alcohol abuse and diabetes, since these
decrease host defences. Rapid urbanisation can create ideal conditions for epidemics
associated with high population density, crowded living and working conditions and life style
changes. The higher risk of tuberculosis among people in low socio-economic groups is
probably due to a greater exposure to some of these risk factors and to limited access to
high quality health care. However, the causal pathway linking poverty and low SES to
increased risk of tuberculosis is not fully understood.
24
In EU countries, the contribution of
HIV to the case-load of tuberculosis in the general population differs between countries,
25
but
socio-economic risk factors appear to be more important, especially in countries with low
incidence and mortality rates.
26,27

138
Challenges
Tuberculosis control in the general population relies mainly on the detection of infectious
patients and treatment for at least 6 months with a combination of several antibiotics so as to
cut transmission, reduce suffering, avert mortality and avoid the emergence of drug
resistance. Effective treatment exists, but inadequate treatment or insufficient compliance
may result in failure of cure, early relapse or the development of drug resistance. The DOTS
(Directly Observed Therapy, Short-course) strategy launched in the 1990s took into account
the basic health care elements required to deliver antibiotic treatment effectively. After a
decade of DOTS implementation, in 2006 the new Stop TB Strategy was launched to
improve the tackling of multidrug resistance, the tuberculosis and HIV epidemics, and the
challenges of ineffective health systems.
28,29
The focus of the new strategy is on diagnosis
and curative treatment rather than on prevention. However, the variation in tuberculosis
trends is more strongly associated with biological, social and economic factors than with the
performance of the National Tuberculosis Programmes. In Eastern Europe and former Soviet
Union the increase of the burden of tuberculosis in the 1990s has been explained by
economic decline, social deprivation, poor living conditions and alcoholism (while in Africa,
for instance, it was largely due to HIV). To achieve long term control targets, the current
strategy needs to be complemented with efforts to address risk factors and social
determinants.
24
A framework action plan to fight tuberculosis in the EU has been developed in recent years
with the aim of reducing and eliminating the disease.
25
Control efforts are challenged by
problems such as multidrug resistance, HIV co-infection and concentration of cases in
vulnerable groups. The EU plan is complementary to that of the WHO/EURO to stop
tuberculosis in 18 high priority countries, six of which are either EU Members States or
candidate countries (Bulgaria, Estonia, Latvia, Lithuania, Romania and Turkey).
30
The BCG vaccine has been available since 1921. Though it is effective in limiting severe
disease and mortality in childhood, it has no effect over the transmission of the disease.
There is a wide variability and continuing evolution of BCG vaccination practices across
Europe.
31,32
Countries with an adult prevalence above 20 per 100,000 (Bulgaria, Estonia,
Hungary, Latvia, Lithuania, Poland, Portugal, Romania, Croatia, FYR of Macedonia and
Turkey) recommend universal newborn vaccination. Countries with low prevalence range
from non-systematic use in 6 countries (Austria, Belgium, Denmark, Germany, Luxembourg,
Spain) to universal coverage at birth in 4 (Czech Republic, Finland, Ireland, Slovak
Republic). Vaccination of all children at older ages is offered in 5 countries (France, Greece,
Malta, United Kingdom and Norway), while vaccination only for high risk groups is
implemented in Cyprus, Italy, Netherlands, Slovenia, Sweden and Switzerland. These
differences are not based on evidence and countries should collaborate with ECDC to
uniform practices, since the current situation has an important impact on the quality of
surveillance data.

139
10.3 HIV/AIDS
After the epidemics due to transfusions of blood products in the 1980s and early 1990s,
paediatric HIV/AIDS in Europe is nowadays almost exclusively due to vertical transmission.
The main focus of this chapter is on mother-to-child transmission and on preventive
strategies.
Main Sources of Information
Data were drawn from the European Centre for the Epidemiological Monitoring of AIDS
(http://www.eurohiv.org/) and from the most recent UNAIDS epidemic updates and reports
(http://www.unaids.org/en/). Paediatric HIV incidence and prevalence in most European
countries are not available due to lack of national registers.
Size of the Problem
By the year 2000, 60% of Europe's paediatric HIV/AIDS cases were registered in Romania,
mostly in infants living in public institutions. Policies adopted by Romania and further
improvement in the control of blood products all over Europe have virtually eliminated this
source of infection. Also, widespread implementation of measures to prevent mother-to-child
HIV transmission, complemented by improved detection and early treatment, has virtually
eliminated this source of infection in the region and contributed to the reduction of paediatric
AIDS all over Europe. HIV incidence in the paediatric population of EU, EFTA and candidate
countries is very low compared to other regions of the world. In 2008, only 116 HIV cases
infected through mother-to-child transmission were reported, a 50% decrease compared to
2004.
1
However, HIV in children needs to be considered as a public health priority since
trends in adults are increasing throughout the EU25 countries. In addition, the proportion of
heterosexual transmission is also on the rise. In 2008, women accounted for 31% of newly
diagnosed HIV cases, compared to 24% in 2001. In general, in Europe, prevalence among
pregnant women is below 0.5%; there are, however, wide disparities across countries and
pockets of higher prevalence are common in major urban areas (Figure 10.3.1).
33
Key Messages
• HIV incidence in children is very low in Europe, but trends in young adults are
increasing throughout EU countries.
• Widespread implementation of measures to prevent mother-to-child transmission
has virtually eliminated this source of infection that remains relevant in specific
vulnerable populations such as migrant women coming from countries of high
prevalence.
• Plans to identify HIV-positive pregnant women and start early treatment of mothers
and their babies, if infected, are based on routine HIV testing during pregnancy, but
more integrated guidelines on the performance of antenatal HIV screening are
needed.

140
Figure 10.3.1. Highest reported HIV prevalence at national or regional level among pregnant
women or women giving birth in Europe, 2002-2004.
Causes and Risk Factors
HIV transmission in children living in Europe is almost exclusively mother-to-child. Without
adequate prevention, the risk of transmission of HIV from infected mothers to their children is
approximately 15-30% during pregnancy and labour, with an additional 10-20% of
transmission risk attributed to prolonged breastfeeding. Maternal factors that increase the
risk of transmission include the timing of seroconversion, a high viral load, a low CD4 count,
an advanced stage of the disease, co-infection with hepatitis C virus, tuberculosis and
sexually transmitted diseases, as well as the timing and mode of delivery. Prolonged rupture
of membranes and vaginal delivery complicated by episiotomy, perineal laceration and
intrapartum haemorrhage, are associated with an increased risk of transmission. The most
important child factor is the type of feeding. Breastfeeding is associated with a risk of
transmission that is roughly proportional to its duration. Avoidance of breastfeeding prevents
postpartum transmission of HIV, but formula feeding requires access to clean water and
health education.
34
In Europe, mother-to-child transmission is particularly relevant in specific
vulnerable populations such as migrant women coming from countries of high prevalence.
Challenges
Strategies for the prevention of mother-to-child transmission rely on identification of HIV-
positive women followed by adequate treatments, delivery practices, as well as support for
safe infant feeding.
34-36
HIV tests during pregnancy are needed to identify HIV-positive
pregnant women adequately. Table 10.3.1 shows the different practices reported in 2004/05
by EU countries for routine testing of HIV in women.
37
In most countries, mandatory HIV
screening is considered as undesirable and unethical. Tests are known to be acceptable for
pregnant women if they are accompanied by adequate and sensible counselling focused on
the risk for the newborn. HIV-testing and counselling should be available to all pregnant
women as focusing on vulnerable groups alone has not been successful. However, little is

141
known on the effectiveness of different strategies. More integrated guidelines on the
performance of antenatal HIV screening are needed.
Table 10.3.1 Practices on antenatal HIV screening around 2004/05.
Antenatal HIV screening Country
Universal screening, voluntary testing,
opting in
Austria, Finland, France, Germany, Ireland,
Latvia, Lithuania, Poland, Portugal, Slovak
Republic, Spain, Sweden, United Kingdom
Universal screening, voluntary testing,
opting out
Czech Republic, Estonia, Netherlands
Selective screening, voluntary testing,
opting in
Denmark, Malta
No national screening policy Belgium, Greece, Hungary, Italy, Slovenia
The package of specific interventions to prevent HIV transmission from an infected mother to
her child includes antiretroviral drug use, safer delivery practices and counselling and
support regarding infant feeding. In Europe, the wide implementation of these guidelines has
reduced transmission to very low levels.
38
Since with adequate prevention and treatment
measures the risk of mother-to-child transmission can be reduced from 15-30% to less than
2%, it is of paramount importance that health systems are prepared to support HIV-positive
mothers during pregnancy, delivery and post-partum with adequate care. Efforts have to
focus on the identification of women in need of prevention. Children of infected mothers need
accurate follow-up and monitoring, in addition to antiretroviral treatment according to
guidelines.
39
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2. Rovers MM, Schilder AGM, Zielhuis GA, et al. Otitis media. Lancet 2004;363:465-73.
3. Scallan E, Fitzgerald M, Collins C, et al. Acute gastroenteritis in Northern Ireland and the
Republic of Ireland: a telephone survey. Commun Dis Public Health 2004;7:61-7.
4. Karsten C, Baumgarte S, Friedrich AW, et al. Incidence and risk factors for community-acquired
acute gastroenteritis in north-west Germany in 2004. Eur J Clin Microbiol Infect Dis
2009;28:935-43.
5. WHO. Epidemiological Brief 10: importation of wild poliovirus and response measures in the
European Region. WHO, Geneva, 2010.
6. Gustafsson L, Hessel L, Storsaeter J, et al. Long-term follow-up of Swedish children vaccinated
with acellular pertussis vaccines at 3, 5, and 12 months of age indicates the need for a booster
dose at 5 to 7 years of age. Pediatrics 2006;118:978-84.
7. Muscat M, Bang H, Wohlfahrt J, et al for the EUVACNET group. Measles in Europe: an
epidemiological assessment. Lancet 2009;373:383-9.
8. Marinova L, Muscat M, Mihneva Z, et al. An update on an ongoing measles outbreak in
Bulgaria, April-November 2009. Euro Surveill 2009;14:pii=19442.
(http://www.eurosurveillance.org/ViewArticle.aspx?ArticleId=19442)
9. Ladhani S, Slack MP, Heys M, et al. Fall in Haemophilus influenza serotype b (Hib) disease
following implementation of a booster campaign. Arch Dis Child 2008;93:665-9.
10. Jefferson T, Ferroni E, Curtale F, et al. Streptococcus pneumonia in western Europe: serotype
distribution and incidence in children less than 2 years old. Lancet Infect Dis 2006;6:405-10.
11. Singleton RJ, Hennessy TW, Bulkow LR, et al. Invasive pneumococcal disease caused by non-
vaccine serotypes among Alaska native children with high levels of 7-valent pneumococcal
conjugate vaccine coverage. JAMA 2007;297:1784-92.
12. Van Damme P, Giaquinto C, Huet F, et al. Multicentre prospective study of the burden of
rotavirus acute gastroenteritis in Europe 2004–2005: the REVEAL study. J Infect Dis
2007;195:S4-16.
13. The Paediatric Rotavirus European Committee (PROTECT). The paediatric burden of rotavirus
disease in Europe. Epidemiol Infect 2006;134:908-16.

142
14. Soriano-Gabarró M, Mrukowicz J, Vesikari T, et al. Burden of rotavirus disease in European
Union countries. Pediatr Inf Dis J 2006;25:S7-11.
15. ECDC. Technical Report of the Scientific Panel on Vaccines and Immunisation. Infant and
children seasonal immunisation against influenza on a routine basis during inter-pandemic
periods. ECDC, Stockholm, January 2007.
16. Paget WJ, Balderston C, Casas I, et al. Assessing the burden of paediatric influenza in Europe:
the European Paediatric Influenza Analysis (EPIA) project. Eur J Pediatr 2010;169:997-1008.
17. Balderston C, Larrauri Camara A, Casas I, et al. Severe outcomes attributed to influenza and
respiratory syncytial virus (Rsv) in England, the Netherlands and Spain. Poster
(http://www.nivel.nl/pdf/ESPID_2010.pdf)
18. VENICE/ECDC Collaboration. National seasonal influenza vaccination survey in Europe: final
report. Rome, 2007.
19. EARSS. Annual report 2006. Dutch National Institute for Public Health and the Environment,
Bilthoven, 2007.
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21. Falzon D, Van Cauteren D. Demographic features and trends in tuberculosis cases in the
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factors and social determinants. Soc Sci Med 2009;68:2240-6.
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between tuberculosis and poverty. Int J Tuberc Lung Dis 2004;8:636-47.
27. Suk JE, Manissero D, Büscher G, et al. Wealth inequality and tuberculosis elimination in
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Development Goals. WHO, Geneva, 2006.
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infection in infants in Europe. WHO/EURO, Copenhagen, 2004.
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39. Havens PL, Mofenson LM and the Committee on Paediatric AIDS. Evaluation and management
of the infant exposed to HIV-1 in the United States. Pediatrics 2009;123:175-87.

143
11. Maltreatment
Child maltreatment is defined as ‘all forms of physical and/or emotional ill-treatment, sexual
abuse, neglect or negligent treatment or commercial or other exploitation, resulting in actual
or potential harm to the child’s health, survival, development or dignity in the context of a
relationship of responsibility, trust or power’.
1
Four types of child maltreatment are commonly
identified: physical abuse, sexual abuse, psychological abuse (sometimes referred to as
emotional abuse), and neglect.
h,2
Witnessing intimate partner violence is also regarded as a
form of child maltreatment. Over 80% of maltreatment occurs within the close family, while
sexual abuse can also be perpetrated by other relatives and acquaintances. This chapter will
also cover issues such as child abandonment and trafficking, which are closely related to
abuse and maltreatment.
Main Sources of Information
The main sources of information are systematic reviews on child maltreatment, governmental
and NGO websites, the WHO Health for All database for mortality data, and country reports
from ECPAT (End Child Prostitution, Child Pornography and Trafficking of Children for
Sexual Purposes: http://www.ecpat.net/EI/index.asp). Information is often incomplete since
only a few countries provide data from official registers on child protection and safety
services and from the judiciary. Ad hoc studies include population-based studies centred on
self-reports and studies on cases referred to emergency departments in hospitals. The
incidence of child maltreatment varies according to the reporting procedures and definitions
used.
h
Physical abuse: intentional use of physical force against a child that results in, or has the potential to
result in, physical injury. Sexual abuse: any completed or attempted sexual act, sexual contact, or
non-contact sexual interaction carried out a caregiver on a child. Psychological (or emotional) abuse:
intentional behaviour that conveys to a child that he/she is worthless, flawed, unloved, unwanted,
endangered, or valued only to satisfy someone else’s needs. Neglect: failure to meet a child’s basic
physical, emotional, medical/dental, or educational needs; failure to provide adequate nutrition,
hygiene, or shelter; or failure to ensure a child’s safety.
Key Messages
• A significant number of children in Europe are subject to physical and/or emotional
ill-treatment, sexual abuse, neglect or exploitation. In most instances child
maltreatment is a chronic condition.
• Only a small percentage of maltreated children come to the attention of child-
protection agencies, indicating failure in recognising and reporting maltreatment.
• Child maltreatment has long-lasting effects on mental health, it increases the risk of
drug and alcohol problems, risky sexual behaviour, obesity and criminal behaviour. It
furthermore carries a high risk of intergenerational transmission.
• Although infrequent, child abandonment, exploitation and trafficking represent forms
of maltreatment that pose serious threats to the survival, health and well-being of
children.
• The serious and long lasting consequences of child maltreatment, abandonment
and trafficking, call for increased investments as well as intersectoral and
international collaboration.
• Challenges include the development and implementation of primary prevention
programmes for families who are at risk, improved capacity for early recognition
across child education, more effective social and health services, and appropriate
institutional response once maltreatment has been detected.

144
Size of the Problem
Child maltreatment remains a major public-health and social-welfare problem in Europe.
According to population based surveys, every year 4% to16% of children are physically
abused, and one in ten is neglected or psychologically abused.
3
During childhood, between
5% and 10% of girls and up to 5% of boys are exposed to penetrative sexual abuse, and up
to three times this number are exposed to some type of sexual abuse.
4
Population-based
surveys indicate that the number of people who have been victim of maltreatment in their
childhood far exceeds the number reported by official agencies, which include only referred
cases. For example, in 2006 in England, 24 in every 10,000 children aged 0-17 years were
on child protection registers following reports of actual or highly suspected abuse and/or
neglect,
5
while a study of young English adults 18-24 years of age, who gave retrospective
self-reports on their childhood, showed that 7% had suffered physical abuse, 6% physical
neglect, 5% psychological/emotional neglect, 6% psychological/emotional abuse and 16%
sexual abuse (11% contact sexual abuse).
6
Young women reported more sexual and
emotional abuse than young men. In 2002, a national prevalence study of child maltreatment
in Romania reported that 84% of 714 female and 581 male adolescents aged 13-14 years
had experienced corporal punishment and 24% physical abuse.
7
Emotional abuse was
reported by 21% and contact sexual abuse by 9%, while 8% claimed exploitation by family
members. Neglect was far more prevalent than abuse, with physical neglect reported by
46%, emotional neglect by 44% and educational neglect by 34%. With the exception of
educational neglect, no gender differences were found. The box provides examples of the
available data, mainly taken from a review of ad hoc surveys from countries included in this
report.
3
Retrospective self-report studies consistently show that some children are exposed to more
than one type of maltreatment.
4,6
Due to the heterogeneity of sources, it is not possible to
assess temporal trends across countries. Data from the United Kingdom provide a visual
Self-Reported Maltreatment or Parent-Reported Perpetration
Physical Abuse
• United Kingdom, Finland, Italy, and Portugal: severe parental violence or worse
(hitting with fist/object, kicking, biting, threatening/using a knife/weapon are
classified as severe violence) from 3.7% to 16.3% (5%-35% cumulative).
• FYR of Macedonia, Latvia, Lithuania: yearly prevalence of physical abuse of 12.2%-
29.7%.
• Romania: cumulative prevalence of physical abuse of 24%-29%.
Psychological Abuse
• United Kingdom and Sweden: cumulative prevalence of 4%-9% (based on
categories consistent with severe emotional abuse).
• FYR of Macedonia, Latvia, Lithuania: yearly prevalence of severe or moderate
psychological abuse of 12.5%-33.3%.
Sexual Abuse
• Cumulative childhood prevalence of some sexual abuse is:
– Non-contact sexual abuse: 3.1% boys, 6.8% girls;
– Contact sexual abuse: 3.7% boys, 13.2% girls;
– Penetrative sexual abuse:1.9% boys, 5.3% girls;
– Any kind of sexual abuse: 8.7% boys, 25.3% girls.
8
Neglect
• Incidence of persistent absence of care or provision: 1.4%-15.4% (likely to place a
child at risk of harm, e.g. not enough food, no medical care when needed, no safe
place to stay, serious lack of care).
Witnessing Intimate-partner Violence
• Cross-sectional surveys of adolescents and adults: childhood prevalence of
witnessing intimate-partner violence of 8%-25%.

145
idea of the relative proportion among four types of child maltreatment and of temporal trends
(Figure 11.1).
9
Figure 11.1. Number of child-protection registrations in the United Kingdom according to
primary type of maltreatment and overall rate of registration per 10,000 children younger than
18 years, 2007-8 (Source: UK Department for Children, Schools and Family Referrals, 2008).
Abandonment, Relinquishment and Institutionalisation
Child abandonment and relinquishment
i
put the life of the child at risk as an immediate
consequence, and may lead to institutionalisation and adoption or foster care following a
period of residential care. Most of abandonment and relinquishment cases occur soon after
birth, mostly in maternity hospitals or in their vicinity. In the 1990s,
rates were particularly
high in Romania and Bulgaria, reaching over 1% of all children by the mid 1990s.
10
The
situation has improved since then, more as a result of deinstitutionalisation than of a notable
decline in child abandonment. In Romania there has been a steady decline in the number of
children 0-3 years of age in public institutional care, from 2,880 to 446 per 100,000 between
2001 and 2005. Data for Bulgaria also indicate a substantial decrease in children under 3
years in institutions,
11
particularly important for the long -lasting adverse effects of
institutionalisation and for the fact that in some cases it was accompanied by institutional
abuse.
12
Trafficking
Although the clandestine nature of child trafficking makes quantitative information very
scarce, several studies, included those funded by the EU-funded STOP project, have
i
Abandonment concerns the physical desertion of a child in circumstances where his/her immediate
and future care cannot be guaranteed or presumed. Relinquishment refers to the act of leaving a child
with, or surrendering him/her to the care of an individual or institution with the purpose and conviction
that his/her immediate and future needs will thereby be ensured. Relinquishment may be carried out
by an identified parent or anonymously.

146
documented trafficking of children for sexual exploitation. Most children are trafficked from
Eastern to Western Europe.
13
Data from the United Kingdom Human Trafficking Centre show
that between April 2009 and March 2010, 215 of the 843 potential cases of human trafficking
from 33 countries were children. The real number might of course be much higher. Evidence
for child trafficking was found in each case, with the majority of cases involving girls aged
between 15 and 18 years.
14
ECPAT reports indicate a decline in child trafficking from south-
eastern countries, such as Albania, between 2000 and 2006. This decline may be due to
various interrelated factors, including the introduction of tougher penalties for traffickers and
the promotion of prevention and protection activities by local and international NGOs. The
same reports also show gaps in the provision of support for the reintegration of victims.
15
Working children and children from Roma communities are some of the social groups most
targeted by trafficking networks. Sexual exploitation is the prevailing purpose of trafficking in
Roma children, who are particularly vulnerable due to social marginalisation, non-school
attendance and a lack of birth registration.
16
Consequences on Health
Child maltreatment can cause death, serious injury, mental health disorders and long-term
consequences that may affect the child’s life into adulthood. WHO Health for All estimates
that deaths due to maltreatment in children younger than 15 years might be around 0.4 per
100,000 children in EU25 countries. Yet, substantial under-reporting occurs because in most
countries there is insufficient routine investigation and a lack of post-mortem examination of
child deaths, including cases diagnosed as SIDS. The biological parents are responsible for
over 80% of cases, and step-parents are to blame for most of the remaining cases (15% of
the total deaths).
Studies show that institutional rearing is associated with substantial psychiatric morbidity.
Removing young children from institutions and placing them in families reduces significantly
internalising mental disorders, although girls are significantly more responsive to this
intervention than boys.
17
Child homicide occurs most frequently during infancy. In the United Kingdom, 35% of child
homicide victims younger than 16 years of age, are younger than one year. Large differences
in infant homicide rates exist across Europe, with higher rates recorded in Central and
Eastern Europe, and the lowest rate consistently higher than in the Western European
countries. The lowest figures are reported from Scandinavia and Southern Europe.
18
It is
worth noting that the peak incidence from 1993 to 2003 in Central and Eastern Europe
coincided with the period of economic and political transition, when community services were
severely disrupted and families were affected by unemployment, loss of security, and
conflict.
19
Although the past 30 years have seen an improvement in child protection in most
European countries, there has been little decrease in the rate of child homicides
(Figure11.2).
Consequences of child maltreatment continue into adulthood and substantially impair
physical and mental health, invariably reducing the person’s quality of life. Table 11.1
provides an overview of the most commonly reported health and social consequences of
child maltreatment. It is also worth noting that a link has been shown to exist between
maltreatment in childhood and the risk of later victimisation, and of becoming a perpetrator of
violence or other antisocial behaviour as a teenager or adult.
20

147
Figure11.2. Age-standardised rates of child death (0-14 years) due to homicide or manslaughter
per 100,000 population in the WHO European Region (Source: WHO Regional Office for Europe.
Health for All database).
Table 11.1. Long term health and social consequences of child maltreatment as documented by
long term prospective studies (+ = moderate association; ++ = strong association).
3
Low educational achievement + Attempted suicide +
Low skilled employment + Alcohol problems +
Behavioural problems as child/adolescent ++ Prostitution/sex trading +
Post-traumatic stress disorder ++ Obesity ++
Depression + Criminal behaviour ++
Causes and Risk Factors
A number of studies have identified risk factors for child maltreatment, associated with child
and parental characteristics, and with aspects related to the whole family and the community
(Table 11.2).
3,7,19,21
Table 11.2. Risk Factors for Child Maltreatment
Child Premature, unwanted, disabled, young
Parent Young age, single parent, unwanted pregnancy, exposure to
violence, substance violence, inadequate prenatal care, poor
parenting skills, physical or mental illness, marital problems,
depression
Family Poverty, lack of social support, size, stress, domestic
violence, high residential mobility
Community/society Lack of child protection laws, lack of birth registration,
decreased value of children (minority, disabled), social
inequalities, racial and religious discrimination, high levels
and tolerance of violence (media, crime, war), cultural norms,
absence of community services
Most of the above risk factors also apply to abandonment and trafficking. LBW, health
problems or physical and/or mental disabilities in newborns are typically common causes of

148
abandonment. Other causes are: extreme poverty, mother working as a sex worker, and
family disruption. A consistent finding across Europe is that infants are more at risk of fatal
injury, physical abuse and neglect than older children, indicating that it is essential to
intervene early in the child’s life with health and social services to prevent maltreatment.
22
It
should be noted that there is no reliable evidence to suggest that some minority groups are
more likely to maltreat their children than others, although children from some minorities may
be over-represented in residential care due to poverty and social neglect. Regarding
abandonment and trafficking, young children and their families are especially vulnerable in
countries undergoing social and economic transition, where health and social services may
be poorly resourced.
18
Challenges
The main challenge is to increase cross-sectoral investments to prevent child maltreatment,
abandonment and trafficking, and to minimise their consequences. Investments should
address:
• Primary prevention, through universal services aimed at providing support to parenting,
and parenting competence and skills.
• Secondary prevention, through targeted services aimed at providing social and
psychological support for families and communities with risk factors, identified as being
in need of further help.
• Tertiary prevention, through specialist services offered once child maltreatment has
been detected, or abandonment has occurred, and aimed at preventing re-
victimisation, and at preventing or reducing the consequences of institutionalisation.
There is increasing awareness in Europe of the scale of child maltreatment and of the need
for prevention and child protection. However, there are still many gaps in the capacity to
identify and report child maltreatment, and even greater gaps in the capacity to develop and
implement preventive and intervention programmes.
3,22
The threshold for intervention differs
from country to country, and even within countries, depending on the quality of social
services and the judiciary’s specific competencies. Services offered to children also depend
on available resources. A key aspect of this is what children are actually offered once a
serious maltreatment has been documented. When parents fail to protect or take care of their
children, there is often no alternative between keeping the child in the family and extrication
(and possible institutionalisation).
22
Child protection systems cannot be based on legislation alone. Guidelines and legislation to
prevent violence to children should develop in parallel with public awareness and cross-
sectoral service provision. Where systems and sectors do not work harmoniously and
according to shared principles and procedures, several problems emerge, with consequent
lack of recognition, delay in interventions, inappropriate solutions (e.g. residential care), and
long judiciary processes that are not in the best interest of the child. Better surveillance
systems able to capture the real dimensions of this problem, and studies carried out to
understand the causal pathways of maltreatment and to assess the effectiveness of
alternative options to residential care are also necessary. Universal birth registration and
improved international collaboration are of paramount need to fight child trafficking.
References
1. Butchart A, Kahane T, Phinney, et al. Preventing child maltreatment: a guide to taking action
and generating evidence. WHO and International Society for the Prevention of Child Abuse and
Neglect, Geneva, 2006.
2. Leeb RT, Paulozzzi L, Melanson C, et al. Child maltreatment surveillance. Uniform definitions
for public health and recommended data elements. Centres for Disease Control and Prevention,
Atlanta, 2008.
3. Gilbert R, Spatz Widom C, Browne K, et al. Burden and consequences of child maltreatment in
high-income countries. Lancet 2009;373:68-81.
4. Janson S, Langberg B, Svensson B. [Violence against children in Sweden. A national survey

149
2006–2007] (in Swedish). Stockholm: Allmanna Barnhuset and Karlstad University, 2007.
5. UK Department for Education and Skills and Department of Health. Children and young people
on child protection registers, England, year ending 31 March, 2006. London, National Statistical
Service, 2006.
6. May-Chahal C, Cawson P. Measuring child maltreatment in the United Kingdom: a study of the
prevalence of child abuse and neglect. Child Abuse Negl 2005;29:969-84.
7. Browne KD. National prevalence study of child abuse and neglect in Romanian families.
WHO/EURO, Copenhagen, 2002.
8. Andrews G, Corry J, Slade T, et al. Child sexual abuse. Comparative quantification of health
risks. WHO, Geneva, 2004.
9. UK Department for Children, Schools and Families. Referrals, assessments and children and
young people who are the subject of a child protection plan or are on child protection registers:
year ending 31 March, 2007. London, 2008.
10. Browne K, Hamilton-Giachritsis C, Johnson R, et al. Overuse of institutional care for children in
Europe. BMJ 2006;332:485-7.
11. UNICEF CEE/CIS. Infant and Young Child Relinquishment in CEE/CIS: A Review of the
Literature. UNICEF, 2011.
12. UNICEF. Child abuse in residential care in institutions in Romania. UNICEF, Bucharest, 2002
13. Wolthius A, Blaak M. Trafficking in children for sexual purposes from Eastern Europe to
Western Europe. ECPAT International, Amsterdam, 2001.
14. UK Human Trafficking Centre National Referral Mechanism www.soca.gov.uk/about-
soca/about-the-ukhtc (accessed 16 January, 2011).
15. ECPAT reports www.ecpat.net/A4A_2005/europe.html (accessed 16 January, 2011).
16. Maksutaj A, Hazizaj A, Barkley ST, O’Briain M. Joint east west research on trafficking in
children for sexual purposes in Europe: the sending countries - Albania Report. ECPAT Europe
Law Enforcement Group. January 2004.
17. Zeanah CH, Egger HL, Smyke AT. Institutional rearing and psychiatric disorders in Romanian
preschool children. Am J Psychiatry 2009;166:777-85.
18. UNICEF. A league table of child maltreatment deaths in rich nations. Innocenti Report Card
number 5. Florence: UNICEF Innocenti Research Centre, 2003.
19. WHO. Preventing violence: a guide to implementing the recommendations of the World report
on violence and health. Geneva, World Health Organization, 2004.
20. Hamilton CE, Falshaw L, Browne KD. A retrospective study of the links between maltreatment
and offending behaviour. International Journal of Offender Therapy and Comparative
Criminology 2002;46:75-94.
21. Sebre S, Sprugevica I, Novotni A, et al. Cross-cultural comparisons of child-reported emotional
and physical abuse: rates, risk factors and psychosocial symptoms. Child Abuse Neglect
2004;28:113–27.
22. WHO. Preventing child maltreatment in Europe: a public health approach. WHO Regional Office
for Europe, Copenhagen, 2007.

150
12. Accidents and Injuries
This chapter will present information showing the relevance of fatal and non-fatal injuries to
child health, and trends, as well as a description of the distribution of selected types of
injuries across population groups. An overview of programmes and actions implemented at
international and national level will be provided, along with examples of effective
interventions. Current debates and information gaps will also be highlighted.
Main Sources of Information
Data on mortality by cause are available in the WHO Mortality Database Table of Registered
Deaths,
1
in the WHO/EURO European Detailed Mortality Database and in the European
Mortality Database.
2,3
Data on incidence can be found in the EU Injury Database of the
European Commission, DG SANCO, and the network of national Injury Database data
providers for all cause injuries and leisure and home accidents.
4
EUROSTAT is the source of
data for accidents in the workplace.
5
For hospital admissions the source is the WHO/EURO
European Hospital Morbidity Database,
6
for burden of disease, the WHO Burden of Disease
database.
7
Different databases use different cut-offs for the different age groups. In the WHO Mortality
Database Table of Registered Deaths, age is grouped as: <1 year, 1-4, and 5-14 years. In
the WHO European Detailed Mortality Database and European Hospital Morbidity Database
age is categorised as <1, 1-4, 5-9, 10-14 years. The European Mortality Database only
presents data for the age group 0-14 years. In the Injury Database, age is categorised as 0-
4, 5-9, 10-14 years. In EUROSTAT, accidents at work are presented only for the category 0-
17 years. The WHO Burden of Disease database includes the age group 0-14 years.
Completeness of data varies across countries. The WHO European Mortality Database and
Burden of Disease database do include all countries, yet for the last 20 years data on child
injury mortality have not been available for Turkey. The WHO Mortality Database Table of
Registered Deaths and European Detailed Mortality Database does not include Turkey. The
WHO European Hospital Morbidity Database does not include Bulgaria, Estonia, Greece,
Malta, Romania, Sweden, FYR of Macedonia nor Turkey. EUROSTAT includes information
on the EU27 countries, Norway and Switzerland. The most recent version of the Injury
Database publicly available contains data only from 6 countries: Austria, Denmark, France,
Netherlands, Portugal and Sweden.
Key Messages
• Although reduction in mortality has been observed in the last two decades, every
year in Europe injuries still cause 4,000 deaths, as well as more than 10% of all the
DALYs lost among children 0-14 years of age.
• The most frequent external causes of fatal injury among children 0-14 years of age
are transport accidents (36%) and drowning and submersion (14%). Among body
parts, the head is frequently involved, accounting for a third of all injuries requiring
admission to hospital.
• Child safety level has been judged to be fair to good in the countries involved in the
2009 Child Safety Action Plans, but improvement is still needed through the
adoption, implementation and enforcement of effective approaches to injury
prevention.
• Childhood deaths from injury follow a social gradient. Inequalities among and within
countries probably reflect differences in the environment that determine disparities
in exposure to risk factors and in enforcement practices.

151
Size of the Problem
Mortality
In the EU27 countries, injury is one of the leading causes of death in children 1-14 years of
age, accounting for 32% of all deaths within this age group.
8
In EU27 plus Croatia, FYR of
Macedonia and the EFTA countries, approximately 4,000 children 0-14 years of age die from
an injury every year.
1,2
About 3,500 additional deaths are estimated to occur every year
among children in Turkey.
7
Figure 12.1 presents the age-standardised death rates (SDR) by
country. For EU27, this was around 5 per 100,000 in 2008, while in EU15 countries it was
around 4, and 9.5 in EU12 countries. The highest SDR were recorded in Bulgaria, Estonia,
Latvia, Lithuania and Romania. The difference between countries at the two ends of the SDR
spectrum is significant: up to 6 times. In 2008, in the EU27 countries, and in the age group 0-
14 years the SDR of boys (6.15 deaths/100,000) was almost double than that of girls (3.86).
The crude death rate estimated for the year 2004 among children in Turkey was 16.9 deaths
per 100,000 less than 15 years of age.
7
Figure 12.1. SDR from injury per 100,000 children 0-14 years of age, by country.
0246810121416
CH 2007
NO
MKD
HR 2008
UK 2007
SE 2008
ES 2008
SI 2008
SK 2005
RO
PT 2004
PL 2008
NL 2008
MT 2008
LU 2007
LT 2008
LV 2008
IT 2007
IE 2008
EL 2008
DE 2006
HU 2008
FR 2007
FI 2008
EE 2008
DK 2006
CZ 2008
CY 2008
BG 2008
BE 2004
AT 2008
SDR per 100,000
Approximately 15% of injury deaths among children 0-14 years of age occur in infancy, 27%
in children 1-4, 23% in children 5-9, and 35% in those 10-14 years of age.
2
Figure 12.2
shows the number and the distribution of injury deaths by age group and country.
Trends
In the last 20 years, a reduction in the SDR was observed across Europe, as shown in Figure
12.3. However, in the EU15 group of countries, the rate of non-fatal occupational injuries in
people younger than 18 years of age has remained stable in the decade between 1998 and
2007.
5

152
Figure 12.2. Number and distribution of injury deaths by age group and country.
5
18
24
2
10
3
6
2
64
78
7
15
3
29
6
13
1
16
41
20
105
13
32
3
67
3
2
2
4
19
33
20
1
21
6
11
10
158
118
25
15
9
69
13
19
1
2
29
99
41
139
19
3
92
8
101
10
9
8
13
7
20
38
4
9
9
4
8
106
98
15
16
11
58
20
17
1
16
92
43
160
18
3
70
12
60
8
3
5
14
19
28
43
3
25
17
6
12
151
139
22
32
19
112
18
26
2
27
200
44
172
16
3
90
15
141
17
17
16
12
0% 20% 40% 60% 80% 100%
AT 2008
BE 2004
BG 2006
CY 2007
CZ 2008
DK 2006
EE 2008
FI 2008
FR 2007
DE 2006
EL 2008
HU 2008
IE 2008
IT 2007
LV 2007
LT 2008
LU 2006
MT 2008
NL 2008
PL 2007
PT 2003
RO 2008
SK 2005
SI 2008
ES 2005
SE 2007
UK 2007
HR 2008
MKD 2003
NO 2007
CH 2007
< 1 year 1-4 years 5-9 years 10-14 years
Figure 12.3. Trend of SDR from injury by country in the age group 0-14 years from 1990 to 2009.
0
5
10
15
20
25
30
35
40
45
50
1990 1995 2000 2005
CH
NO
IS
MKD
HR
UK
SE
ES
SI
SK
RO
PT
PL
NL
MT
LU
LT
LV
IT
IE
HU
EL
DE
FR
FI
EE
DK
CZ
CY
BG
BE
AT

153
Admission to Hospital
In addition to fatalities, non-fatal injuries and their disabling consequences have a
tremendous impact on health. It is estimated that each year, 7.8 million children 0-14 years of
age have to be treated for an injury in EU hospitals, meaning that 1 out of 10 children in the
EU suffers each year from an injury requiring emergency medical attention.
8
In this age
group and every year, there are over 700,000 admissions to hospital because of injuries.
6
Figure 12.4 shows the number and the distribution of hospital admissions by age group and
country. It should be noted, comparing Figures 12.4 and 12.2, that for some countries, e.g.
Portugal, there is no correspondence between the ranking according to the absolute number
of deaths and the number of admissions. Approximately 8% of admissions involve infants,
27% children 1-4, 28% those 5-9, and 36% those 10-14 years of age.
6
Figure 12.4. Number and distribution of hospital admissions due to injury by age group and
country.
2032
1457
105
2054
240
295
8586
19071
961
890
7226
387
505
17
952
3441
492
208
158
2362
5641
1193
18
170
985
6392
5022
552
7034
1680
1418
27740
55540
4853
3979
21706
1616
2174
171
4787
13610
2026
2330
824
7799
22361
1377
84
1856
3530
5822
5166
378
6199
2287
1715
29580
54084
4847
3359
20364
1503
2143
183
4956
16674
2102
2474
901
7913
24892
2125
105
2498
4173
9102
5175
406
9343
3039
2539
39061
62590
6971
3179
26885
2262
3610
230
4847
27642
2218
3556
1106
9017
34367
2429
160
3231
5592
0% 20% 40% 60% 80% 100%
AT 2007
BE 2007
CY 2007
CZ 2007
DK 2006
FI 2007
FR 2007
DE 2007
HU 2007
IE 2007
IT 2006
LV 2008
LT 2008
LU 2007
NL 2005
PL 2007
PT 2005
SK 2007
SI 2007
ES 2005
UK 2007
HR 2006
IS 2006
NO
CH 2007
< 1 year 1-4 years 5-9 years 10-14 years
Burden of Disease
In the 33 countries analysed, injuries are responsible for the annual loss of approximately
760,000 DALYs among children 0-14 years of age.
7
DALYs lost because of an injury
represent more than 10% of all the DALYs lost annually among children. The rate of DALYs
by country is shown in Figure 12.5. Generally, the distribution of the rate of DALYs by
country reflects the distribution of mortality. However, that is not always the case. For
example, there are countries, such as Finland and Norway, where child injury mortality is
relatively low, but the rate of DALYs is high, indicating that an important source of the burden
of injuries in those countries depends on the disability that comes as a result of non-fatal
events.

154
Figure 12.5. Estimated DALYs per 100,000 children 0-14 years of age, by country, in 2004.
0 200 400 600 800 1000 1200 1400 1600 1800
CH
N
IS
TR
M
HR
UK
SE
ES
SI
SK
R
PT
PL
NL
MT
LU
LT
LV
IT
IE
HU
EL
DE
FR
FI
EE
DK
CZ
CY
BG
BE
AT
DALY/100,000
Causes and Risk Factors
Injuries can be classified according to a number of characteristics, such as their outcome
(fatal vs. non-fatal), the place of occurrence, the activity being carried out when injured, the
objects/substances involved, the role of human intent (unintentional vs. intentional), or the
mechanism. For ease of presentation, often the two classifications by intention and
mechanism are combined so that the mechanism is shown in case of unintentional injury,
whereas the persons responsible for the injury are highlighted for intentional injuries. This is
known as the classification of injuries by external cause. Its distribution is important for
preventative purposes. Figure 12.6 shows the distribution of fatal injuries according to
external cause. For some causes, there is a great difference across age groups. In fact, the
proportion of fatal injuries determined by transport accidents increases with age (from 14% in
infants to more than 40% in children 5-14 years of age), whereas the proportion of fatal
assaults decreases with age (from 12% in infants, to 2% in children 10-14 years of age).
Fatal falls are particularly frequent among children 1-4 years of age (7%), with drowning
being an important cause of death in children between 1 and 9 years of age (almost 20%).
Among children 10-14 years of age drowning is a less common cause of death (10%), and
even rarer among infants (3%). Suicide is almost not existing among children less than 10
years old, whereas among older children the relative frequency becomes high (14%).
Among children 0-14 years of age, approximately 91% of the DALYs are attributable to
unintentional injuries and only 9% to intentional ones.
7
In particular, one fifth of DALYs is
attributable to road traffic accidents. Another fifth is attributable to falls, meaning that the
impact of falls on the health of children is mostly attributable to the disability caused by non-
fatal events. On the other hand, the proportion of DALYs which can be attributed to drowning
is 4%, meaning that this mechanism of injury often leads to death.
Regarding non-fatal injuries, in children under 5 years of age over 50% occur at home, with
falls being the most frequent mechanisms. Traffic injuries account for about 17% of all child

155
injuries, with more severe consequences compared to other injuries. The main role of
children in traffic injuries is as riders (63%), passengers (23%) or pedestrians (6%).
8
Figure 12.6. External causes of fatal injuries in Europe among children 0-14 years of age.
36%
14%
6%
5%
5%
5%
3%
27%
Transport accidents
Drow ning and submersion
Assault
Falls
Smoke, fire and flames
Intentional self-harm
Poisoning
Other
Sport Injuries
Sports injuries represent an interesting issue because they occur during activities that are
encouraged as part of a healthy life style.
9
In 2005, in the 6 countries providing input into the
Injury Database, over 700,000 injuries were estimated to have occurred during sports
activities among children 0-14 years of age, with a crude incidence rate ranging from 13
accidents per 1,000 in Portugal to 47 per 1,000 in France.
4
Approximately 80% of these
accidents involved children 10-14 years of age, who had the highest incidence rate, ranging
from 34 per 1,000 in Portugal, to 113 per 1,000 in France. Children 5-9 years of age had
much lower rates, ranging from 4 to 30 per 1,000 in Portugal and Austria, respectively. Only
about 2% of accidents involved children less than 5 years of age, whose rates were very low
(from less than 1 per 1,000 in Portugal to 4 per 1,000 in Austria). The sports during which
injuries were more common were team sports with balls (over 300,000 cases/year in the 6
countries) and non-motorised wheel sports (about 140,000/year), followed by winter sports
(about 80,000/year), gymnastics (70,000), combat sports and animal sports (50,000
respectively). In some countries (Denmark, Portugal, Sweden), the incidence rate of sports
injuries was similar between boys and girls, whereas in others (Austria, France, Netherlands)
the rate was higher among boys, possibly due to differences in the sports practised by boys
and girls. In those countries, more girls than boys were injured while doing gymnastics,
animal and dance sports. On the other hand, more boys than girls resulted injured while
doing sports with rackets, bats or sticks, team sports with balls, combat sports, non-
motorised wheel sports, and motor sports. Similar number of boys and girls suffered an injury
while doing athletics, winter, water and climbing sports. Figure 12.7 shows the relative
frequency of injuries in boys and girls for the most common groups of sports. Almost one in
10 accidents involved the head, over one in 3 the lower extremities, and almost half affected
the upper extremities. Injuries to other body regions were less common.
4
Approximately 7%
were examined in the emergency room and sent home without treatment, 40% were sent
home after treatment, 8% were referred for further treatment by general practitioners, 35%
were referred for further treatment as an outpatient, 5% were admitted to hospital, and a
smaller proportion died.

156
Figure 12.7. Relative frequency of selected sport injuries in boys and girls 0-14 years of age.
0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%
Gymnastics
Sports with rackets, bats, sticks
Team sports with balls
Combat sports
Non-motorised wheel sports
Motor sports
Animal sports
Winter sports
Water sports
Dance sports
Girls Boys
Occupational Injuries
Injuries occurring at work are another important issue because working is an activity that
most people do not choose to do, and this is especially true when children are concerned. In
the EU15 countries and Norway, in 2006, there have been approximately 44,000
occupational injuries causing more than three working days to be lost, and 18 deaths, among
individuals younger than 18 years of age. Figure 12.8 shows the incidence rates (injuries per
100,000 people employed) of non-fatal injuries standardised by economic activity in the
EU15 countries, Norway and Switzerland.
Figure 12.8. Incidence rate of occupational injuries causing more than three days lost,
standardised by economic activity in the EU15 countries, Norway and Switzerland in people
younger than 18 years of age (no data from Portugal).
0 1000 2000 3000 4000 5000 6000 7000 8000 9000 10000
CH
NO
UK
SE
ES
NL
LU
IT
IE
EL
DE
FR
FI
DK
BE
AT
Injuries per 100,000 employed persons

157
Injuries to Specific Body Regions
Information on the distribution of injuries by body region is important in order to estimate their
impact on health. In effect, even injuries caused by the same mechanism, e.g., motor vehicle
crash, may have different impacts depending on the body regions affected. For example, a
fracture to the skull or the femur is likely to have more implications in terms of disability, pain,
loss of school or work days, and limitation of leisure activities, than a fracture to a finger,
regardless of the external cause determining the injury. Of all children admitted to the
hospital because of an injury, 20% suffered intracranial injuries and another 14% other kinds
of injuries to the head, 15% had fractures to the forearm, 5% to the lower leg, and 2% to the
femur.
6
The distribution of hospital admissions due to different types of injuries is not uniform
across age groups. For example, infants accounted for 18% and 13% of admissions due to
intracranial and other head injuries, respectively, whereas they represented less than 1% of
those due to fractures of the forearm and lower leg. On the contrary, children 10-14 years of
age account for the greatest proportion of admissions due to those types of injury (50% of
admissions for forearm fracture and 64% of those for lower leg fracture). These patterns may
reflect, on one hand, the types of injuries actually suffered by children of different ages,
depending in turn on the activities carried out when injured, as well as on the mechanism of
injury. On the other hand, they reflect a different tendency of admission to hospital of children
of different ages with particular types of injuries (e.g. head injuries).
Challenges
In 2004, the 4
th
Ministerial Conference on Environment and Health held in Budapest
approved the Children’s Environment and Health Action Plan for Europe (CEHAPE). The
CEHAPE identifies four priority goals (see Chapter 13). The second of these goals was: ‘to
prevent and substantially reduce health consequences from accidents and injuries […] by
promoting safe, secure and supportive human settlements for all children’.
9
The CEHAPE
encouraged the development and implementation of national action plans on children’s
health and the environment. To assess the status of these plans, a survey conducted in 2009
showed that most countries had already developed their national plans, some were still
developing them (Ireland, Italy, Poland, Slovenia, FYR of Macedonia), and two (Croatia,
Switzerland) had not yet started. No information was available on Romania.
10
Most plans
were part of other programmes rather than stand-alone plans. Measures included in the
plans ranged from legislation (including, for example, harmonisation with EU legislation) to
health promotion, awareness-raising campaigns, monitoring of exposure, health surveillance
and research.
Most CEHAPE plans addressed accidents and injuries. They were not, however, specific to
injuries. Other more focussed action plans have been developed under the leadership of the
European Child Safety Alliance (ECSA) through the Child Safety Action Plans (CSAP)
initiative, with co-funding and partnership from the EC, the Health and Environment Alliance,
UNICEF, WHO/EURO, two UK universities, and partners in each of the participating
countries. The CSAP initiative aims to facilitate the development of government-endorsed
child safety action plans. Participating countries work through a common process that
includes standard collection of data on uptake of good practices and leadership, as well as
infrastructure and capacity building actions to enhance child injury prevention efforts. The
first phase involved 18 EU countries and ran from 2004-2007. As a result, in addition to
national CSAPs, Child Safety Report Cards and Profiles were produced to serve as part of
the assessment phase in the development of the action plans and as a baseline for future
benchmarking and evaluation. The cards summarised a country’s performance regarding the
level of safety provided to children and adolescents through national policies. Country
progress in the CSAP process until September 2007, measured in 9 steps, is shown in
Figure 12.9. The 9 steps include: government engagement (step 1), national partner
engagement (step 2), situational analysis (step 3), vision statement (step 4), identification of
critical issues (step 5), goals and objectives (step 6), action steps (step 7), government
endorsement (step 8), and communication of plan (step 9).The second phase of the project

158
involves 26 countries: Austria, Belgium, Cyprus, Czech Republic, Estonia, Finland, France,
Germany, Greece, Hungary, Iceland, Ireland, Italy, Latvia, Lithuania, Luxembourg, Malta,
Netherlands, Portugal, Slovenia, Spain, Sweden, Wales, Scotland and Northern Ireland in
the United Kingdom, and Israel. In addition, eight countries follow the process as observers,
namely: Denmark, Croatia, FYR of Macedonia, Norway, Poland, Slovak Republic,
Switzerland and England.
j
Child safety level in those countries has been judged to be fair to
good, as illustrated in Figure 12.10. Countries that overall scored the highest were Iceland,
Netherlands, Sweden, Czech Republic, Austria, Slovenia, France, United Kingdom, Germany
and Finland.
11
All countries that participated in the 2007 and 2009 assessments showed an
improvement in the level of child safety performance.
Figure 12.9. Child Safety Action Plan process: country progress as of September 2007.
12
Step 1 Step 2 Step 3 Step 4 Step 5 Step 6 Step 7 Step 8 Step 9
AT
BE
CZ
DE
DK
EE
EL
ES
FR
HU
IT
NL
NO
PL
PT
SE
UK*
UK**
* Northern Ireland; ** Scotland
Step completed Step in progress No action
Figure 12.10. Overall child safety grades in Europe.
11
j
Updated Child Safety Report Cards and Profiles have been published in 2009 for 24 countries and
are available at http://www.childsafetyeurope.org/csi/eurosafe2006.nsf/wwwVwContent/l4downloads-
111.htm?OpenDocument.

159
ECSA has also published a Child Safety Good Practice Guide to prevent ineffective
strategies from continuing to be practised across Europe despite evidence that they are not
making the best use of resources.
13
The Guide describes several approaches that offer
proven or promising strategies in child injury prevention and safety promotion, but it also
provides examples of good practice, such as:
• Modifications of the environment (e.g. playground equipment design and installation);
• Modifications of products (e.g. child-resistant lighters);
• Legislation, regulation and enforcement (e.g. regarding the use of child passenger
restraint);
• Promoting the use of safety devices (e.g. smoke detectors);
• Supportive home visits to families of young children;
• Community-based interventions (e.g. promotional campaign bicycle helmet);
• Education and skills development (e.g. pedestrian skills training).
Deaths from injury follow a social gradient. Child injury mortality rates are higher in countries
with lower income, and in children from lower socio-economic class families within these.
These inequalities are a growing concern.
14
They may reflect differences in the environment
that determine disparities in exposure to risk factors and in enforcement practices. The
experience of countries that have already developed effective approaches to injury
prevention, and rank now among the safest countries regarding this particular issue, should
be regarded as a valuable resource and be seen as motivational force for other countries to
invest in child injury prevention. In fact, a number of strategies, actions, and practices have
been proven to reduce childhood injury. Despite this evidence, and as reflected by the sub-
optimal child safety scores assigned in the CSAP initiative, many countries have not yet
adopted and/or fully implemented and enforced those evidence-based measures. Challenges
in the implementation of action plans include insufficient human and/or financial resources,
insufficient capacity to implement the plans, low relative importance compared to other
priorities, inadequate intersectoral collaboration, and insufficient political support.
15
More
attention needs to be drawn to the promotion of actions for child safety. ECSA is very active
on this and is constantly involved in initiatives and campaigns to raise awareness on child
safety issues or that aim at influencing key decision makers.
References
1. WHO Mortality Database 2006. Table1: Number of Registered Deaths
http://apps.who.int/whosis/database/mort/table1.cfm.
2. WHO/EURO European Detailed Mortality Database 2010 http://data.euro.who.int/dmdb/.
3. WHO/EURO European Mortality Database 2010 http://data.euro.who.int/hfamdb/.
4. EC. EU Injury Database (IDB), DG SANCO and the network of national IDB data providers
2009. Years 2002-2007 https://webgate.ec.europa.eu/idb/.
5. EC. Eurostat. Health and safety at work 2010
http://epp.eurostat.ec.europa.eu/portal/page/portal/health/health_safety_work/data/database.
6. WHO/EURO European Hospital Morbidity Database 2010
http://data.euro.who.int/hmdb/index.php.
7. WHO Department of Measurement and Health Information. Burden of Disease 2009. Death and
DALY estimates for 2004 by cause for WHO Member States,
http://www.who.int/healthinfo/global_burden_disease/gbddeathdalycountryestimates_persons_a
ge_2004.xls.
8. KfV and Eurosafe. Injuries in the European Union. Statistics Summary 2005-2007. Vienna,
2009.
9. WHO/EURO. Children’s Environment and Health Action Plan for Europe. 4
th
Ministerial
Conference on Environment and Health. Budapest, Hungary, 23–25 June 2004,
http://www.euro.who.int/_data/assets/pdf_file/0006/78639/E83338.pdf.
10. WHO/EURO. Health and environment in Europe: progress assessment. WHO, Copenhagen,
2010.
11. MacKay M, Vincenten J. Child safety report card 2009: Europe summary for 24 countries.
Amsterdam: European Child Safety Alliance, Eurosafe, 2009,
http://www.childsafetyeurope.org/csi/eurosafe2006.nsf/wwwVwContent/l4downloads-
111.htm?OpenDocument.

160
12. MacKay M, Vincenten J. Action planning for child safety: a strategic and coordinated approach
to reducing the number one cause of death for children in Europe. Amsterdam: European Child
Safety Alliance, Eurosafe, 2007,
http://www.eurosafe.eu.com/csi/eurosafe2006.nsf/wwwVwContent/l4childsafetyactionplan2004-
2007.htm.
13. MacKay M, Vincenten J, Brussoni M, et al. Child safety good practice guide: good investments
in unintentional child injury prevention and safety promotion. Amsterdam: European Child
Safety Alliance, Eurosafe, 2006,
http://www.eurosafe.eu.com/csi/eurosafe2006.nsf/0/ECDD37FB32D6F244C125737D0051010B
/$file/GoodPracticeGuide-web.pdf.
14. Sethi D, Towner E, Vincenten J, et al. European report on child injury prevention. WHO,
Copenhagen, 2008,
http://www.who.int/violence_injury_prevention/child/injury/world_report/European_report.pdf.
15. Eurosafe. European Child Safety Alliance. Child Safety in Europe. CSAP Country Partner
Update (Winter 2009),
http://www.childsafetyeurope.org/csi/eurosafe2006.nsf/wwwVwContent/l3childsafetyineurope.ht
m.

161
13. Environment-Related Diseases
Environment-related diseases include all conditions that are entirely or partially attributable to
exposure to environmental factors, including the physical and the wider psychosocial
environment. Children, particularly from conception to the earliest years of life, are uniquely
vulnerable to environmental hazards and a substantial proportion of child mortality and
disability is attributable to early environmental exposures.
1,2
This chapter presents a synthetic
overview of the evidence regarding the health effects of children's exposure, from conception
to adolescence, to the main environmental contaminants in Europe. It follows the framework
adopted by the Children’s Environment and Health Action Plan for Europe (CEHAPE),
3
approved by the 4
th
Ministerial Conference on Environment and Health held in Budapest in
June 2004 (see box), and focuses on priority goals I, III and IV. Goal II is covered in
Chapters 2 and 9.2, for physical activity, and in Chapter 12, for accidents and injuries.
Main Sources of Information
The main sources of information are the Environmental Burden of Disease (EBD) estimates
for children,
2
the exposure estimates of a 2007 report on children’s health and environment in
Europe,
4
the WHO European Health Reports of 2009,
5
a recent progress assessment on
Key Messages
• Exposure to outdoor and indoor air pollution is a major cause of mortality and
morbidity in European children.
• Chemical and physical agents such as heavy metals, dioxins, polychlorinated
biphenyls (PCB), pesticides, noise, ionizing and ultraviolet radiation cause
substantial hazards to children in all countries.
• Unsafe water and inadequate sanitation are also an important cause of disease in
rural areas and marginalised population groups.
• There is increasing concern about the risks deriving from multiple low level
exposures to chemicals during embryo-foetal development.
• There has been progress in risk reduction, notably in the area of lead, dioxins and
PCBs, indoor and outdoor air and water pollution thanks to the EU REACH
(registration, evaluation, authorisation and restriction of chemical substances)
legislation, the development of Europe-wide environmental health indicator and
monitoring systems and of children’s environment and health action plans.
• Challenges include the further development of child focused monitoring and
biomonitoring systems, and the establishment of intersectoral collaboration to
implement child focused risk reduction policies that take into account the marked
inequities in children’s exposure and vulnerability to environmental toxicants across
countries, age groups and socio-economic levels.
CEHAPE Priority Goals
I. ‘To significantly reduce the morbidity and mortality arising from gastrointestinal
disorders and other health effects, by ensuring that adequate measures are taken to
improve access to safe and affordable water and sanitation for all children’.
II. ‘To prevent and substantially reduce health consequences from accidents and
injuries and pursue a decrease in morbidity from lack of adequate physical activity,
by promoting safe, secure and supportive human settlements for all children’.
III. ‘To prevent and reduce respiratory diseases due to outdoor and indoor air pollution,
as well as contributing to a reduction in the frequency of asthmatic attacks, in order
to ensure that children can live in an environment with clean air’.
IV. ‘To reduce the risk of disease and disability arising from exposure to hazardous
chemicals (e.g. heavy metals), physical agents (e.g. excessive noise) and biological
agents and to hazardous working environments during pregnancy, childhood and
adolescence’.

162
health and environment in Europe,
6
the Environment and Health Information System (ENHIS)
fact sheets,
k
and a number of other primary studies and reports.
Available data on mortality and DALYs attributable to environmental factors are available
only from regional estimates,
l
they are mostly based on estimates of exposure and dose-
response studies, and usually extrapolated from primary data available form single country or
multi-country studies. As a consequence, the confidence intervals are large for all mortality
rates and DALYs estimates. Exposure data are relatively complete for main air pollutants,
including passive smoke, unsafe water and inadequate sanitation, although not for all
countries considered in this report. Exposure data on chemicals and physical agents are
available at country level for restricted and often selected population groups.
Size of the Problem
Unsafe Water and Inadequate Sanitation
The health effects of poor water and sanitation are relatively limited in Europe. It is estimated
that almost 100% of the population of the countries included in this report has access to
improved water supply and sanitation.
4
The EBD study estimated that in the EU15 countries,
60% of diarrhoea cases and 0.01% of total under 5 mortality was attributable to lack of water
and sanitation facilities. But the proportion rises up to 87% of diarrhoea cases and 2% of
overall mortality in rural areas in Turkey and other south eastern countries, where a
significant part of the rural population, and in some cases part of the urban population living
in poor neighbourhoods, has no access to public water supply and live in dwellings with no
connection to sanitation facilities.
7
Polluted Air
Several factors contribute to determine respiratory disease in children, including infections,
diet, social conditions and the availability of medical care. Air pollution, from out and indoor,
is among the key determinants of preventable respiratory disease. Air pollution increases the
incidence of acute and chronic diseases in infants and very young children and affects the
development of their respiratory system.
8
Over half of the children, in Europe are regularly
exposed to environmental tobacco smoke at home. In some countries, the prevalence of
exposure reaches 90%.
9
Around 15% of people live in damp homes, which contribute to the
development and exacerbation of asthma.
10
Exposure to products derived from the
combustion of solid fuels is a considerable health problem in the eastern part of Europe.
Outdoor Air Pollution
Figure 13.1 shows the population exposure to PM
10
(particulate matter of 10 micrometers or
less), as an average annual concentration, in various European cities in 2004, or in the last
available year. This is expected to approximate the exposure in children, assuming children
comprise similar proportions of the cities’ populations. Over the last few years, there has
been some improvement in average exposure levels in urban areas of Europe.
11
However,
the vast majority (89%) of people, including children, living in European cities where PM
10
is
monitored, are exposed to levels exceeding the WHO air quality guideline level of 20 µg/m
3
and for 14% of people, the higher EU limit value of 40 µg/m
3
is exceeded.
5
This gives rise to
a substantial risk to children’s health.
k
The ENHIS has been developed through collaborative projects coordinated by the WHO European
Centre for Environment and Health in Bonn, together with several Member States and the EC DG
SANCO as part of a broader initiative on European Health Information Systems.
l
Estimates are based on the WHO European Region, which includes all former USSR countries and
Israel.

163
Figure 13.1. Percentage of population living in cities with various PM
10
levels, 2007 or last
available year (Source: ETC/ACC Technical Paper, 2010).
According to the EBD study, outdoor air pollution is estimated to be responsible for a
percentage between 0.1% and 5.9% of all-cause deaths among children 0−4 years of age,
with the higher estimates in South Eastern European countries and Turkey.
7
These results
are significant because they quantify the impact of outdoor air pollution on child mortality.
However, they are likely to underestimate the real impact on health for a number of reasons.
On one hand, PM
10
was used as a proxy for outdoor air pollution, yet other co-pollutants,
spatially or temporally unrelated to PM
10
may have an impact on child health and may in turn
affect the data. On the other hand, only a subset of adverse outcomes (i.e. fatal outcomes)
was estimated, while upper respiratory illnesses, LBW and its long-term health effects, were
not considered.
A review of several studies demonstrated the strong effect of PM on respiratory mortality in
the post-neonatal period.
8
The risk of respiratory-related post-neonatal mortality is more than
doubled for each 10 µg/m
3
increase in PM
2.5
, after adjustment for other risk factors.
12
While
evidence suggests that air pollution is associated with the exacerbation of pre-existing
asthma, an association with the onset of asthma has not been consistently shown. However,
recent studies, including birth cohort studies, are addressing these limitations, and there is
increasing evidence that exposure to traffic-related air pollutants such as fine PM, black
smoke and nitrogen dioxide, is associated with an increased risk for the onset of asthma in
young children.
13
Among the major contributors to urban air pollution, road transport is
becoming more and more important. The exposure of children to traffic related air pollutants
such as PM has a considerable impact on their health and well-being.
14

164
Indoor Air Pollution
The main sources of indoor air pollution are the use of solid fuel for heating and cooking
purposes, and second hand tobacco smoke. The household combustion of coal or biomass
produces smoke that contains carbon monoxide, nitrogen oxides, sulphur oxides, benzene,
formaldehyde, polyaromatic compounds (such as benzopyrene and benzene), and
suspended particulates. There are wide differences within Europe regarding the proportion of
children living in homes where solid fuel is used. In most countries, less than 5% of the
population, is exposed to solid fuel, but this proportion increases in rural areas. The
proportion of children exposed to second hand tobacco smoke at home ranges between 20%
and 85%, with the higher rates observed in Central and Eastern European countries (FYR of
Macedonia, Croatia, Greece, Romania, Slovak Republic, Hungary) and Turkey.
15
In infants and young children, exposure to second hand tobacco smoke increases the risk of
SIDS, acute lower respiratory tract infections, chronic respiratory symptoms, middle ear
disease, reduced pulmonary function and asthma.
9
Smoke-free policies have led to drastic
decreases in exposure to second hand tobacco smoke (up to 90% in low-exposure settings)
as well as in daily cigarette consumption and in smoking by young people.
16
Several
diseases have been linked to the exposure to solid fuel use, including acute lower respiratory
infections in young children and asthma in school-aged children.
17
In the EBD study, up to
5.6% of all deaths in children younger than 5 years were attributable to indoor air pollution.
This burden was virtually confined to South Eastern European countries and Turkey.
7
A few
studies provide suggestive evidence of a link between indoor air pollution and adverse
pregnancy outcomes, in particular LBW.
Children, who tend to spend more time at home than adults and whose immune systems are
still developing, are at increased risk of developing respiratory disorders when living in damp,
mouldy housing. European survey data indicate that exposure to damp is a frequent health
risk, with 18% of the EU population exposed in 2007.
10
Exposure varies greatly among
countries, however, ranging between 5% and 37%. Damp houses are especially frequent in
the new EU Member States. The prevalence of asthma, cough and wheezing among children
living in homes with problems of damp or mould is 1.4–2.2 times higher than among children
living in drier housing conditions.
Chemical and Physical Agents
Several thousands of chemical agents are dispersed in the environment; they enter the
human body mainly through food and air. The information on exposure is only available for
few countries and for limited population samples. Data on exposure to chemical hazards in
food are only available for the general population in 15 EU countries and there is no
harmonised monitoring in children.
Heavy Metals
Heavy metals remain of particular concern, despite having been a priority for regulatory
measures for decades. This section focuses on lead and mercury; evidence on
developmental neurotoxicity is within both of these very strong.
18
The organic form of mercury, methylmercury, appears to be of greatest concern when it
comes to children. The main source of exposure to methylmercury in the general population
is food, in particular fish. Toxicity has been demonstrated at low exposure levels, yet fish can
also be an important component of a healthy diet and the risks and benefits of fish
consumption must be considered.
19
The estimated intakes of methylmercury in Europe vary
by country and region, depending on the levels of pollution and on the amount and type of
fish consumed.

165
Lead is responsible for intellectual disability, measured as loss of intelligence quotient score.
The most important toxic effect of long-term exposure is on the brain, particularly during the
first two to three years of life, when early development of the central nervous system takes
place. Exposure to lead during this period increases the risk of intellectual disability, ADHD
and other developmental disabilities.
18,20
Blood lead level above 5 µg/dl has been associated
with toxicity in the developing brain and nervous system of young children, leading to a lower
intelligence quotient.
18
Lead in the environment has multiple sources, including the
combustion of leaded petrol, industrial processes, paint, solder in canned foods and water
pipes. Exposure to lead occurs through a number of pathways, such as air, household dust,
road dirt, soil, water and food. Evaluation of the relative contribution of the different sources
is complex and is likely to differ between areas and population groups.
The EBD study estimated in 0.94% the average proportion of children with a measurable loss
in intelligence quotient due to exposure to lead in the EU15 countries. This proportion rises to
2.82% for the other countries included in this report. Emission trends from 24 European
countries have shown that, between 1990 and 2003, the total emissions of lead dropped by
90%.
21
In the mid 1980s, a collaborative study between WHO and the EC found that levels of
lead in children’s blood were of 18.2–18.9 µg/dl in Bulgaria, Hungary and Romania,
compared to 11.0 µg/dl in Italy and 7.4 µg/dl in Germany.
20
This difference was still evident in
the 1990s, with considerably lower levels in France, Germany and Sweden. The benefits of
unleaded petrol are illustrated by a series of blood lead measurements carried out in 3,700
children living in urban areas of Sweden, where a dramatic decline was observed between
1978 and 2005 (Figure 13.2).
21
Figure 13.2. Blood lead levels in Swedish children, 1978−2005 (Source. WHO/EURO, 2007).
PCBs and Dioxin-like Compounds
Dioxins and PCBs are highly persistent and highly toxic environmental pollutants, which at
present are derived mainly from waste incineration and other industrial processes. From
these sources, they spread into nature and pollute human food, including breast milk, so that
basically all children in Europe are exposed to measurable levels. The toxicity of dioxins and
PCBs is well described from animal studies and from a number of human epidemiological
studies, including several large cohort studies.
22
Developmental exposure has been shown to
affect endocrine (mainly for dioxins) and cognitive (mainly for PCBs) systems. Measurable
outcomes include reduced intelligence quotient and changes in behaviour patterns. Some

166
measures aimed at reducing exposure to dioxins have been partly successful: since the
1980s, there has been a 70–80% decrease in intakes, suggested by intake estimates and
concentrations in human breast milk (Figure 13.3).
23
Among the persistent organic pollutants
(POP), PCBs and dioxin-like compounds have the lowest safety margins, therefore
monitoring is still called for.
Figure 13.3 Dioxin levels in human milk in selected countries, 1988-2007 (Source: WHO 2007).
Pesticides
Children may be exposed to pesticides in several ways, such as transplacental transfer
during foetal life, intake of contaminated breast milk and other nutrients, or contact with
contaminated subjects and areas in the environment, such as pets treated with insecticides,
house dust, carpets and chemically, treated lawns and gardens. Pesticides may cause a
variety of health effects in children, ranging from acute poisoning to chronic subtle effects on
the immune and nervous systems. Exposure early in life, and particularly during periods of
rapid development, such as during foetal life and infancy, may have severe effects on the
child’s health and development by raising the risk of congenital malformations, cancer,
immunological dysfunction, endocrine disease, and neurobehavioural deficiencies. Exposure
of parents may have consequences for the offspring, leading to reduced chance of male birth
and an increased risk of childhood cancer.
24
Little is known about children’s exposure to
pesticides by direct biomonitoring, and information on food concentrations. Exceeding the
limit values is rare in European products, but more common in fruits and vegetables imported
from outside Europe. A safety factor of 100 is usually used in setting the tolerable daily intake
values for pesticides. Estimates of actual pesticide intake are usually 1% or less of tolerable
daily intake, but children living close to areas where pesticides are used, may be exposed to
much higher doses through a variety of sources.

167
Physical Agents
Exposure to physical agents, such as ionizing radiation, ultraviolet radiation (UVR), noise and
electromagnetic fields (EMF), is widespread and is known to be hazardous to the
development of organisms, from conception to adolescence. Among exposures to physical
agents, the most common is exposure to UVR, but there are increasing concerns regarding
noise and EMF, including those deriving from the use of mobile phones.
Children and adults are exposed to natural solar UVR, but artificial sources of UVR, such as
sun beds, also contribute to exposure and health risks. UVR has a number of beneficial
effects, including the endogenous production of vitamin D. However, excessive exposure to
UVR causes a considerable disease burden in many populations. UVR in childhood is an
important risk factor for severe diseases in adulthood, including melanoma and non-
melanoma skin cancer, which in many European countries, particularly in the north, is
showing an impressive increase in incidence. Evidence suggests that sunburn during
childhood and adolescence is linked to melanoma in relatively young people. Other skin
cancers, as well as some eye diseases and other skin problems, are associated with excess
exposure to UVR.
25
Efforts towards environmental health protection must therefore focus on
the reduction and avoidance of excess exposure. Data on the incidence of melanoma are
direct measures of UVR-related disease, and time trends of melanoma in people aged under
55 years, can be interpreted as indicators of effective reduction in the exposure of children
and adolescents to UVR.
The percentage of the population complaining about noise ranges between 12% in Hungary,
Iceland, Ireland, and Norway, to 31% in Cyprus and Romania.
5
Children exposed are at risk
of adverse health effects, such as sleep disturbance and learning impairment, and
adolescents may suffer from severe hearing loss due to the use of portable music devices.
26
Extremely low frequency EMF is increasingly present in the home and outside environment.
The average residential exposure to EMF densities higher than 0.3-0.4 μT has been
associated with an increased risk for developing childhood acute lymphoblastic leukaemia
and has been classified as a possible human carcinogen.
27
The rapid increase in mobile
phone use has also generated concern about possible health risks related to radiofrequency
EMF, particularly in children, due to their longer exposure over the life course. Overall, no
increase in risk of glioma or meningioma was observed with the use of mobile phones;
though there have been suggestions of an increased risk of glioma at the highest exposure
levels.
28
Despite this limited evidence, the EU and the WHO recommend the use of the
precautionary principle in incorporating all technological and industrial processes.
Environmental Inequity in Children
The EBD study showed striking differences in the burden of environmental-related diseases
across countries. Differences are particularly clear in poverty-related exposures such as lack
of water and sanitation, or traditional heating and cooking systems using biomass fuel.
Differences are marked within countries too. A systematic literature review conducted to
evaluate the evidence on environmental inequalities among children in Europe, showed that
children living in adverse social circumstances suffer from multiple and cumulative
environmental exposures. A low socio-economic position is associated with an increased
exposure of children to traffic-related air pollution, noise, lead, environmental tobacco smoke,
inadequate housing and residential conditions.
29
For most of these exposures, there are no
studies investigating the modification of the exposure/response function by SES, and it is
therefore impossible to quantify the magnitude of environmental inequalities.

168
Challenges
Comprehensive Plans and Initiatives
The main challenges include the assessment of specific hazards and risks posed by
children’s exposure to the environment, the further development of child-focused monitoring
and biomonitoring systems, and the establishment of intersectoral collaboration to implement
child-focused, risk-reduction strategies that address the marked inequities across socio-
economic groups in children’s exposure and vulnerability to environmental toxicants.
Over the last decade, since the issue was first raised in the 3
rd
Ministerial Conference on
Environment and Health held in London in 1999, considerable progress has been made in
Europe, through the adoption of comprehensive regulations and plans, such as REACH and
CEHAPE, and through the issuing of policies addressing specific environmental health
issues. REACH is a EC regulation on chemicals and their safe use. It entered into force on
1
st
June 2007. Its aim is to improve the protection of human health and the environment
through better and earlier identification of hazards of chemical substances, including the
identification of those hazards which are specifically harmful to children. REACH makes the
industry responsible for assessing and managing the risks posed by chemicals and for
providing appropriate safety information to users. As part of CEHAPE, many Member States
have already developed national children’s environment and health action plans (Figure
13.4).
6
In addition to stimulating countries to develop national policies and plans, CEHAPE
has also promoted and coordinated action on children’s health that cuts across departmental
and sectoral boundaries and involves different levels of government. It has positively
influenced interventions to reduce environmental risks to children’s health, the development
of information and monitoring systems and of public information and awareness, and
intersectoral collaboration between health and environmental sectors, followed by transport
and education.
5
Figure 13.4. The state of the art of CEHAPE development in the European Region in 2009
(Source: WHO, 2010).

169
The challenge is now to put into practice plans at country level, and Europe-wide action so
as to support this implementation. The setting up of a standard information system for
environmental health focused on children is a key step. ENHIS, run in collaboration between
the EC and WHO, is an example of harmonised and evidence-based information system for
the support of public and environmental health policies. First released in 2007 and updated
at the end of 2009, ENHIS enables users to apply scientific information to public health
decision-making in countries, to monitor trends and assess the effectiveness of interventions,
to make comparisons with the progress made in other countries, to measure the rate of
achievement of targets set by Europe-wide action programmes, and to share knowledge and
good practices.
Specific Actions
Specific actions have been taken to control chemicals used in the food production chain,
through adequate enforcement of the instructions for their use and the meeting of limits set
by the European Food Safety Authority (EFSA) and adopted by the EU and FAO/WHO
Codex Alimentarius standards. If these were strictly enforced, ample safety margins would
be guaranteed also for children. For unwanted contaminants (heavy metals, POPs, microbial
or plant toxins, and other natural contaminants), regulatory methods can control intake only
to a limited extent. Whenever possible, control measures should be directed also at the
primary source of contamination. This has been done, for example, by discontinuing the use
of lead in petrol and the commercial use of PCBs and persistent pesticides, as well as by
controlling dioxin emissions from waste incineration and industries.
EU Member States have also implemented strong control measures for smoking, since the
adoption of Recommendation 2003/54/EC, and most countries have enforced laws in
response to EU Directives 2003/33/EC and 2001/37/EC. The WHO Framework Convention
on Tobacco Control has been ratified by most European countries, and many have already
banned smoking in public places. For private indoor environments, the focus should now be
on awareness-raising measures. More information is needed on the effects of exposure to
environmental tobacco smoke at home for children’s health. In addition, further information is
required on what kind of campaign is most effective for parents to encourage smoke-free
homes. In the long term, a non-smoking social norm can be envisioned, with a trend towards
smoke-free societies.
While action continues based on REACH and CEHAPE, the main future challenges lie in
ensuring adequate intersectoral collaboration, particularly between health, education,
transport, industry and agriculture, and in communicating risk and promoting awareness at
local level, as a complement to international and national programmes and directions.
30
To
achieve this, it will be important to incorporate health and environmental issues in the
curricula of all health professionals, and to ensure that appropriate information is circulated to
families and communities. Establishing biomonitoring systems through standard methods
and sampling will also be crucial so as to observe exposure and risk, and prioritise action.
Finally, action is needed along the entire causal pathway of the social divide in environmental
hazards, with priority to measures aimed at preventing that socially-determined differences in
environmental conditions contribute to health inequities from the earliest stages of life.
31
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