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Cerebral palsy is traditionally known as a major cause of chronic disability in childhood. With advances in neonatal care and improved survival, the majority of adolescents with cerebral palsy require ongoing services into adulthood. This paper highlights some of the challenges in their transition from pediatric to adult healthcare and proposes key elements to ensure a smooth transition process.
Changing trends in the prevalence of cerebral palsy (CP)
Systematic reviews on the prevalence of CP among children
report a median of 2.4 per 1000 children, which has been fairly
stable among various demographics.1In Canada only two
studies have focused on the prevalence of CP in the general
population of children, both using administrative databases
(ICD-9 codes). The first study from Alberta reports on a birth
cohort from 1985 to 1989, with a prevalence of 2.57 per 1000
children eight years of age.2The second study from British
Columbia reports on a birth cohort from 1991 to 1995, with a
prevalence of 2.68 per 1000 live births.3
Studies on the prevalence of CP among premature survivors
have shown mixed results on trends for increased prevalence
over time, coinciding with the improved survival of extreme
premature newborns. There have been four studies in Canada
following prospective cohort of neonatal intensive care unit
survivors in Alberta, Nova Scotia, Quebec and Ontario.4-7 Of
these, two found an increased prevalence4,5 while two found that
the prevalence remained stable despite increased survival in the
post surfactant era6,7. The worldwide literature also shows a mix
of findings, with evidence for decreased prevalence and severity
in very low birth weight infants.8-10 The first ‘special care baby
units’ were established in the 1950s, and surfactant was
introduced in the 1980s, with routine use in most centers in the
late 1980s and antenatal steroids in the early 1990s. These
advances have contributed to improved survival of premature
newborns and the inverse relationship between gestational age
and prevalence of CP has been well established.11 Whether the
prevalence of CP is stable or changing over time, the
characteristics of the population may be changing with different
severities, subtypes and co-morbidities. This highlights the
ABSTRACT: Cerebral palsy is traditionally known as a major cause of chronic disability in childhood.
With advances in neonatal care and improved survival, the majority of adolescents with cerebral palsy
require ongoing services into adulthood. This paper highlights some of the challenges in their transition
from pediatric to adult healthcare and proposes key elements to ensure a smooth transition process.
RÉSUMÉ: Défis actuels de la transition entre les soins de santé pédiatriques et adultes des patients atteints de
paralysie cérébrale. La paralysie cérébrale est connue traditionnellement comme une cause majeure de handicap
chronique chez l’enfant. Avec les progrès des soins en néonatologie et l’amélioration de la survie, la majorité des
adolescents atteints de paralysie cérébrale nécessitent des services à l’âge adulte. Cet article souligne certains des
défis rencontrés au moment de la transition entre les soins pédiatriques et les soins adultes et propose des éléments
clés pour assurer un processus de transition harmonieux.
Can. J. Neurol. Sci. 2012; 39: 23-25
Growing Up With Cerebral Palsy:
Contemporary Challenges of Healthcare
Maryam Oskoui
From the Department of Pediatrics, Division of Pediatric Neurology, Montreal
Children’s Hospital, Montreal, Quebec, Canada.
Correspondence to: Maryam Oskoui, Department of Pediatrics, Division of Pediatric
Neurology, Montreal Children’s Hospital, 2300 Tupper street, A-512, Montreal,
Quebec, H3H 1P3, Canada.
importance of population-based patient registries in Canada to
better assess the burden of CP in the Canadian population.12
Neonatal graduates of the post surfactant era are only now
becoming adults. Furthermore, increased use of prenatal
neuroprotective magnesium sulfate in Canada with recent
guidelines can potentially decrease the incidence of CP in
premature infants.13
Growing up with CP
Although CP is defined as a static motor disorder, it is
superimposed on the dynamic processes of development and
aging.14 Over 90% of individuals with CP live beyond their 18th
birthday.15 Adults with CP require ongoing health services to
continue to monitor for needs that were present in childhood.
Feeding difficulties, gastroesophagal reflux, constipation,
seizures, progressive scoliosis, contractures and dislocations
secondary to unremitting spasticity continue to be important
medical issues to address. Access to routine care, dental care and
screening are also important, such as cardiovascular health, pap
smears and mammographies. There are, however, a number of
new health issues that emerge in adulthood for this patient
population. Overuse syndromes, chronic pain and fatigue,
osteoarthritis and osteoporosis, and an overall decline in
mobility have all been reported among adults with CP.16
The access to care once individuals are of adult age remains
problematic. A recent study in Ontario on health care use
patterns among 587 teens and 477 young adults showed a greater
rate of outpatient visits among CP patients (x 2.2 in teens, x 1.9
in adults) compared to age-matched peers and a higher rate of
hospital admissions (x 4.3 in teens, x 10.6 in adults). Adults with
CP had significantly more visits to general practitioners and
significantly fewer visits to specialists than teens with CP, with a
trend toward increased number of emergency department
visits.17 In a report on the burden of neurological diseases in
Canada, the Public Health Agency of Canada estimates that total
costs associated with CP in 2000–2001 were $381.8 million,
recognizing that there are insufficient data to assess the full
impact and explicitly calling for more research in this area.18
Looking at the literature on outcomes in adults with CP from
1970 to 2010, a mapping review showed two new important
trends.19Studies reporting on the access to and use of health care
have only emerged since 1997, showing markedly diminished
access after adulthood. There has also been an increased focus on
contextual factors (personal, environmental) over time, with four
studies published in the 1990s and 21 studies published since
2000. Such contextual factors are important determinants of
quality of life in individuals living with chronic disabilities.20
Family functioning, behavioral difficulties, and motivation are
reported as important predictors of social-emotional adaptation.
These factors among others should be targeted in transition
Transition challenges
Most institutions transfer patients with CP to adult care rather
than transition them. Transfer is the actual responsibility of care
of the patient being moved from a pediatric setting to an adult
care setting. Transition is the “purposeful, planned preparation of
patients, families and caregivers for transfer of a patient from a
pediatric to an adult care setting.”21 Over the past decade there
have been numerous position statements addressing transition as
a priority mandate for those caring for youth with special health
care needs.21-23 The key challenges in transitioning young adults
with CP are common to all individuals living with chronic
disabilities having special health care needs. The individual’s
maturity and cognitive ability, the preparation of the patient and
family, and access to specialists and multidisciplinary care as
adults are but a few of the key issues.
Although most Canadian medical institutions require transfer
of care at 18 years, it is well accepted that age is not the best
indicator of preparedness.24 The individual’s maturity and
cognitive ability are important factors to consider, and preparing
individuals to become increasingly autonomous in their
interaction within their health care environment within a
developmental appropriate process is encouraged. Examples
include making appointments, taking medications, and actively
participating during medical visits. Individuals with significant
cognitive impairment who will continue to be fully dependent as
adults will need additional consideration for proxy decision
making, legal guardianship and estate planning. Preparing
patients and families for eventual transfer to adult care includes
educating them on their medical condition, their medications and
side effects, self-management skills, and learning to navigate the
adult health care system. It is especially important for patients
and other family members to know their medical history when
faced as adults with the reality of aging parents and new health
care professionals who are unfamiliar with them. The transition
process should focus on preparing these patients and families for
a lifecourse, living with a chronic disability and optimizing their
full intrinsic potential.
Although ensuring the continuity of healthcare, with routine
preventive care, dental care and rehabilitation services is a focus
within medical establishments, individuals need to transition in
other spheres that may be just as important. These include
education and employment, finances and benefits, housing,
transportation, leisure activities and relationships. Without
preparation, families, patients and even pediatric health care
professionals can be reluctant to transfer patients with special
healthcare needs to adult care at a critical time when patients are
undergoing many transitions in their life that create multiple
personal and familial challenges. Pediatric and adult health care
environments have traditionally been different in their approach,
with pediatric care being more family-centred and paternalistic.
Parents worry that their concerns will not be addressed in the
adult milieu, that they will no longer be able to advocate
effectively for their adult children or navigate an increasingly
fragmented health care system on their child’s behalf. There is
also a bond with the pediatric health care professional who has
known the family from the time of initial diagnosis. Difficulty
finding a primary care provider is especially a challenge for
these patients who would benefit from having a primary care
provider to coordinate their care. A multidisciplinary specialized
care environment is also needed as a resource, where a
coordinated multifaceted team approach helps avoid multiple
trips and fragmented care. Specialists and multidisciplinary care
clinics for adults with CP are few and far between, and a lack of
knowledge or treatment comfort of adult care providers for CP is
often postulated.25,26 Adults with CP also see their access to
rehabilitation services progressively diminish over time. A
recent study using semi-structured individual interviews with
teens and adults with cerebral palsy, spina bifida, and acquired
brain injuries of childhood, and their parents, asked them to
identify barriers to transition and propose solutions. The top four
barriers were: lack of access to healthcare, lack of professional
knowledge, lack of information provided, and uncertainty
regarding the transition process.27 The two simple solutions
highlighted were more information and more support throughout
the transition process.
Models of transition
Transition of care is a process incorporating the develop-
mentally appropriate preparation of the patient within their
family unit for their eventual transfer to adult care. Effective
transfer of patients necessitates communication between
healthcare workers and sharing of information, going beyond a
simple transfer summary which may not be obtained in time and
lacks details of previous investigations and functional status of
the patient. Patients with CP can be transferred to a number of
different clinical environments: a primary care clinic, a general
adult neurology clinic within the community, a subspecialty
clinic if available, a rehabilitation center, or a joint pediatric and
adult healthcare provider clinic. The latter are increasingly
favored within various subspecialties, where both the pediatric
and adult health care professionals involved see the patients
jointly to ensure a smooth transfer of care. However such clinics
may not be feasible within most busy practices and may be
limited in number and less accessible to those living outside
urban centers. Allowing the patient to return to see the pediatric
care provider after their initial adult care visit may be a
reasonable option, ensuring that there is no gap in care and
providing the family with any needed additional resources within
their community. Several transition checklists are readily
available in the literature and online which can be adapted and
used clinically at various ages.28,29 An evidence-based model and
suggested practice guidelines for the transition of youth with
disabilities has been elaborated in Ontario, and follow-up on
field testing of this model will be of interest.30
The important elements of the transition process are to start
early and plan ahead, prepare for a lifecourse, and involve
families. Benefits of a transition program for individuals with CP
include better continuity of care and information sharing
between pediatric and adult care providers, improved patient
care and education, and potentially reduced long term health care
costs. A transition program also provides physicians and trainees
with an educational opportunity to learn about the process and
evolving care of adults with CP, with the hope of inspiring some
adult care providers to specialize in the care of this evolving and
expanding adult population.
The author thanks NeuroDevNet for the opportunity to
present on this topic during the second Annual Brain
Development Conference, and Dr. Michael Shevell for his
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Volume 39, No. 1 – January 2012 25
... Children with CP require ongoing services to adulthood [3,10]. Thus, to maximize their educational and developmental potential, children with cerebral palsy require support Generally, the prevalence of cerebral palsy is 2.4 per 1000 children, but it varies from country to country, with the prevalence being higher in African countries than in Western countries [7,8]. ...
... Children with CP require ongoing services to adulthood [3,10]. Thus, to maximize their educational and developmental potential, children with cerebral palsy require support and multidisciplinary care [11]. ...
Full-text available
Background: The family represents the most essential and supportive environment for children with cerebral palsy (CP). To improve children's outcomes, it is crucial to consider the needs of families in order to offer family-centered care, which tailors services to these needs. Objective: We conducted a needs assessment to identify the family needs of patients with CP attending two hospitals in Accra. Methods: The study was a cross-sectional study involving primary caregivers of children with CP attending neurodevelopmental clinics. Structured questionnaires were used to collect data spanning an 8-month period. The data were summarized, and statistical inference was made. Results: Service needs identified were childcare, counseling, support groups, financial assistance, and recreational facilities. Information needs included adult education, job training/employment opportunities, education, health and social programs, knowledge about child development, and management of behavioral and feeding/nutrition problems. Reducing extensive travel time was desirable to improve access to healthcare. With the increasing severity of symptoms came the need for improved accessibility in the home to reduce the child's hardship, as well as assistive devices, recreational facilities, and respite for the caregiver(s). Conclusion: Families of children with CP have information, service, and access needs related to their disease severity and family context.
... Prior research suggests that during this time individuals with CP engage in more passive, solitary activities, which can affect self-concept and sense of belonging [3][4][5]. They are less likely to pursue post-secondary education, have low employment rates, and take part in fewer social activities [6][7][8]. In order to ease the transition from adolescence to adulthood for young people with CP, it is important to gain a better understanding of the relationship between the maturing brain and the physical, psychosocial, and cognitive factors that influence quality of life and wellbeing. ...
Full-text available
Background Cerebral Palsy (CP) is a group of disorders that affect the development of movement and posture. CP results from injuries to the immature brain during the prenatal, perinatal, or postnatal stage of development. Neuroimaging research in CP has focused on the structural changes of the brain during early development, but little is known about brain’s structural and functional changes during late adolescence and early adulthood, a period in time when individuals experience major changes as they transition into adulthood. The work reported here served as a feasibility study within a larger program of research ( MyStory Study). We aimed to determine whether it would be feasible to scan and obtain good quality data without the use of sedation during a resting state condition for functional connectivity (FC) analyses in young adults with CP. Second, we aimed to identify the FC pattern(s) that are associated with depressive mood ratings, indices of pain and fatigue, and quality of life in this group. Methods Resting state functional images were collected from 9 young people with CP (18–29 years). We applied a stringent head motion correction and quality control methods following preprocessing. Results We were able to scan and obtain good quality data without the use of sedation from this group of young individuals with CP who demonstrated a range of gross motor ability. The functional connectivity networks of interest were identified in the data using standard seed regions. Our analyses further revealed that higher well-being scores were associated with higher levels of FC between the Medial Pre-Frontal Cortex and the right Lateral Parietal regions, which are implicated in prosocial and emotion regulations skills. The implications of this association are discussed. Conclusion The findings of the present study demonstrate that it is feasible to conduct resting state functional connectivity in young adults with CP with different gross motor abilities without the use of sedation. Our results also highlight a neural circuitry that is associated with the self-report of quality of life and emotion regulation. These findings identify these regions/circuitries as important seeds for further investigations into mental health and wellbeing in CP.
... How ever, the provision of health care services and specialized programs tends not to keep pace with the needs of families and indi viduals, thereby making the transition from childhood into adulthood a challenge. 14,48,49 As people with cerebral palsy experience a loss or reduction in the provision of health care services when they transition to adulthood, their demand for informal caregiving increases, and parents and rela tives often step in to provide financial support and the required care. As noted in our study, the hours provided of informal care per week and outofpocket expenses incurred by the caregivers of people with cerebral palsy are substantially higher than those incurred by the relatives or friends of those who do not have the con dition. ...
Full-text available
Introduction The objective of our study was to present model-based estimates and projections on current and future health and economic impacts of cerebral palsy in Canada over a 20-year time horizon (2011–2031). Methods We used Statistics Canada’s Population Health Model (POHEM)–Neurological to simulate individuals’ disease states, risk factors and health determinants and to describe and project health outcomes, including disease incidence, prevalence, life expectancy, health-adjusted life expectancy, health-related quality of life and health care costs over the life cycle of Canadians. Cerebral palsy cases were identified from British Columbia’s health administrative data sources. A population-based cohort was then used to generate the incidence and mortality rates, enabling the projection of future incidence and mortality rates. A utility-based measure (Health Utilities Index Mark 3) was also included in the model to reflect various states of functional health to allow projections of health-related quality of life. Finally, we estimated caregiving parameters and health care costs from Canadian national surveys and health administrative data and included them as model parameters to assess the health and economic impact of cerebral palsy. Results Although the overall crude incidence rate of cerebral palsy is projected to remain stable, newly diagnosed cases of cerebral palsy will rise from approximately 1800 in 2011 to nearly 2200 in 2031. In addition, the number of people with the condition is expected to increase from more than 75 000 in 2011 to more than 94 000 in 2031. Direct health care costs in constant 2010 Canadian dollars were about $11 700 for children with cerebral palsy aged 1–4 years versus about $600 for those without the condition. In addition, people with cerebral palsy tend to have longer periods in poorer health-related quality of life. Conclusion Individuals with cerebral palsy will continue to face challenges related to an ongoing need for specialized medical care and a rising need for supportive services. Our study offers important insights into future costs and impacts associated with cerebral palsy and provides valuable information that could be used to develop targeted health programs and strategies for Canadians living with this condition.
Background: Transition from paediatric to adult care is challenging for youths with a chronic condition. Most transition programmes place high value in autonomy and independence. We undertook a qualitative study to: (1) identify the needs and aspirations of youths and (2) better understand the well-being and flourishing of youths. Methods: Semi-structured interviews were conducted with youths, parents of youths and healthcare professionals recruited from four clinics. Thematic analysis focused on: (1) perceptions of transition; (2) key aspects of human flourishing during transition; and (3) salient concerns with respect to the transition and dimensions of human flourishing. Results: 54 interviews were conducted. Perceptions of transition clustered around: (1) apprehension about adult care; (2) lack of clarity about the transition process; (3) emotional attachment to paediatric healthcare professionals; (4) the significance of the coinciding transition into adulthood. Fourteen salient concerns (e.g., Knowledge and information about the transition, Parental involvement in healthcare) were identified with corresponding recommendations. Salient concerns related to important dimensions of human flourishing (e.g., environmental mastery, autonomy). Discussion and conclusion: The flourishing of youths is affected by suboptimal transition practices. We discuss the implications of our findings for environmental mastery, contextual autonomy, and the holistic and humanistic aspects of transition.
This study explored the lived experience of transition from adolescence to adulthood for young people with cerebral palsy to inform occupational therapy practitioners as to what might promote positive life opportunities. A phenomenological methodology was used with six participants, aged 18 to 25 years with cerebral palsy. The findings are presented in the form of hermeneutic stories and three themes: The storm of uncertainty; time, space and the body, Capsizing in a world of others and, Securing anchorage; being heard and understood. Recommendations include service integration across health, social care and education based on partnership and provision of coordinators.
Background Lateral column lengthening (LCL) is commonly performed on children and adolescents with cerebral palsy (CP) for correction of pes planovalgus (PPV). There are limited reports of the long-term outcomes of this procedure. The purpose of this study was to examine the long-term results of LCL for correction of PPV in individuals with CP by evaluating subjects when they had transitioned to adulthood and were entering the workforce. Methods Clinical assessments, quantitative gait analysis including the Milwaukee Foot Model (MFM) for segmental foot kinematics, and patient reported outcomes were collected from 13 participants with CP treated with LCL for PPV in childhood (average age 24.4 ± 5.7 years, average 15.3 ± 8.5 years since LCL). Additionally, 27 healthy adults average age 24.5 ± 3.6 years functioned as controls. Results Strength and joint range of motion were reduced in the PPV group (p < 0.05). Sixty nine percent showed operative correction of PPV based on radiologic criteria. Gait analysis showed reduced walking speed and stride length, as well as midfoot break and residual forefoot abduction. Patient reported outcomes indicated that foot pain was not the only factor that caused limited activity and participation. LCL surgery for PPV in childhood resulted in long-term operative correction. Decreased ankle passive range of motion and strength, subtalar joint arthritic changes, inefficient and less stable ambulation, and problems with participation (difficulties in physical function, education, and employment) were observed in the long-term. Conclusion This study identified postoperative impairments and limitations to guide future clinical decision-making. These results provide clinicians and researchers the common residual and recurrent issues for these individuals as they age. The inclusion of contextual factors that influence the disease and impairments can equip these individuals with enhanced skills they need as they transition into adulthood.
Objective To identify pain phenotypes among adults living with cerebral palsy (CP), and compare phenotypes in terms of pain intensity, anxiety and depressive symptoms, and self-reported perceived stress. Method Seventy-one adults with CP who presented to the University of Michigan (mean age = 39.3±16.2; 43 females, 28 males). The median of 6 on the American College of Rheumatology fibromyalgia survey was used to classify patients for nociplastic pain centralization. The painDETECT Score was used to classify patients for neuropathic pain. These measures were then used to cross-classify each patient into one of four possible pain categories: neuropathic, nociplastic, mixed neuropathic/noclipastic or nociceptive pain (-neuropathic/-nociplastic pain). Results Twenty-eight adults with CP (39.4%) were classified as nociceptive, 24 (33.8%) as nociplastic, 8 (11.3%) as neuropathic, and 11 (15.5%) as mixed neuropathic/nociplastic. Subgroups differed significantly on average scores on the Brief Pain Inventory pain intensity scale, the Perceived Stress Scale, and on the Patient-Reported Outcomes Measurement Information System measures of anxiety and depression; the nociceptive pain subgroup reported lower pain and emotional distress compared with the other groups. Conclusion Findings suggest that type of pain is variable among adults with CP, and may arise through multiple mechanisms.
The success of transition for children and youth with neurological disorders depends on leadership from the pediatric neurology team to encourage and support the patient's firm knowledge base of the medical condition, gradual acceptance of self-management skills and confident self-advocacy. While the foundations of effective medical transition have been effectively outlined, the challenge remains to translate from principles to practice. The Child Neurology Foundation has published open source, practical guides which are designed to facilitate the ability to structure and monitor the process through adolescence as well as to insure an effective transfer of care to adult providers. In addition, this article provides one hospital;'s efforts to integrate the transition process into the electronic medical record.
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Introduction Le but de notre étude était de présenter des estimations et des projections par modélisation portant sur les répercussions épidémiologiques et économiques actuelles et futures de la paralysie cérébrale au Canada sur une période de 20 ans (2011‑2031). Méthodologie Nous avons utilisé le Modèle de santé de la population (POHEM) – Maladies neurologiques de Statistique Canada pour simuler les états pathologiques, les facteurs de risque et les déterminants de la santé à l’échelle des individus, ainsi que pour décrire et projeter les résultats en matière de santé, en particulier l’incidence de maladies, la prévalence, l’espérance de vie, l’espérance de vie ajustée en fonction de la santé, la qualité de vie liée à la santé et les coûts des soins de santé au cours du cycle de vie des Canadiens. Les cas de paralysie cérébrale ont été relevés à partir de sources de données administratives sur la santé en Colombie-Britannique. Une cohorte représentative de la population a ensuite été utilisée pour produire les taux d’incidence et de mortalité, ce qui a permis ensuite d’établir des projections des taux d’incidence et de mortalité. L’indice de l’état de santé Health Utilities Index Mark 3 (IES3) a également été inclus dans le modèle pour tenir compte de divers états de la santé fonctionnelle, ce qui a permis de réaliser des projections sur la qualité de vie liée à la santé. Enfin, nous avons estimé les paramètres de prestation des soins et les coûts des soins de santé à partir d’enquêtes nationales canadiennes et de données administratives sur la santé, puis nous les avons inclus dans les paramètres du modèle pour évaluer les répercussions épidémiologiques et économiques de la paralysie cérébrale. Résultats S’il est vrai que le taux brut global d’incidence de la paralysie cérébrale devrait demeurer stable, les nouveaux cas diagnostiqués de paralysie cérébrale connaîtront une hausse, passant d’environ 1 800 cas en 2011 à près de 2 200 cas en 2031. De plus, le nombre de personnes atteintes de ce trouble devrait passer de plus de 75 000 en 2011 à plus de 94 000 en 2031. Les coûts directs des soins de santé en dollars canadiens constants de 2010 s’établissaient à environ 11 700 $ pour les enfants de 1 à 4 ans atteints de paralysie cérébrale, comparativement à environ 600 $ pour ceux n’étant pas atteints de cette maladie. En outre, les personnes atteintes de paralysie cérébrale ont tendance à avoir une moins bonne qualité de vie liée à la santé pendant de plus longues périodes. Conclusion Les personnes atteintes de paralysie cérébrale continueront à être confrontées à des difficultés parce qu’elles nécessitent des soins médicaux spécialisés de façon continue et ont un besoin croissant de services de soutien. Notre étude fournit un aperçu significatif des coûts à venir et des répercussions de la paralysie cérébrale et offre des données précieuses qui pourraient servir à élaborer des programmes et des stratégies de santé ciblés pour les Canadiens atteints de cette maladie.
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In this review we draw from clinical experience and a review of the literature to describe important issues for the primary care provider to address during health care transition for youth with Cerebral Palsy (CP). Children and youth with CP are almost always living well into adulthood. Health care transition services for persons with CP must provide support to help them access adult specialty services and overcome insurance barriers while managing primary health issues associated with CP in the young adult such as spasticity. Moreover, providers caring for young adults with CP must carefully screen for and treat common co-morbidities of CP including joint and muscle pain syndromes, constipation, Gastro-Esophageal Reflux Disease (GERD) and behavior issues. Primary care and specialty services for adults with CP are not widely available due to issues related to provider training, insurance, and family and patient related barriers. Providers involved in health care transition for youth and young adults with CP must be active advocates for them in the adult health care system.
To provide guidelines for the use of antenatal magnesium sulphate (MgSO4) for fetal neuroprotection of the preterm infant.
This policy statement describes how the pediatrician can work closely with patients with special health care needs and their families as an advocate and educator to help them adapt positively to an adult-focused system of health care. Issues in health care transitions including independence and dependence, education and vocational issues, insurance issues and limitations, Social Security, and hospitalization are outlined.
The aim of this review is to determine the relationship between gestational age (GA) and prevalence, type, distribution, and severity of cerebral palsy (CP). Epidemiological studies with cohorts expressed by GA were assessed. A comprehensive meta-analysis and meta-regression was performed on four fetal age categories. Studies of children with CP as a target population were added. Twenty-six articles met the inclusion criteria. The prevalence of CP decreases significantly with increasing GA category: 14.6% at 22 to 27 weeks' gestation, 6.2% at 28 to 31 weeks, 0.7% at 32 to 36 weeks, and 0.1% in term infants. Interestingly, a significant decrease in prevalence of CP starts only from a GA of 27 weeks onwards. In preterm infants, spastic CP is predominant. In term infants, the non-spastic form of CP is more prevalent than in preterm infants. Bilateral spastic CP is most prevalent in both preterm and term infants. However, the proportion of unilateral spastic CP in term infants is substantial. No relationship could be detected between severity of CP and GA. There is a strong need for an international, well-described, and generally accepted classification system for subtypes and severity of CP.
Cerebral palsy (CP), the most common major disabling motor disorder of childhood, is frequently thought of as a condition that affects only children. Deaths in children with CP, never common, have in recent years become very rare, unless the child is very severely and multiply disabled. Thus, virtually all children assigned the diagnosis of CP will survive into adulthood. Attention to the adult with CP has been sparse, and the evolution of the motor disorder as the individual moves through adolescence, young adulthood, middle age, and old age is not well understood. Nor do we know what happens to other functional domains, such as communication and eating behavior, in adults with CP. Although the brain injury that initially causes CP by definition does not progressively worsen through the lifetime, the effects of CP manifest differently throughout the lifespan. The aging process must inevitably interact with the motor disorder, but we lack systematic, large-scale follow-up studies of children with CP into adulthood and through adulthood with thorough assessments performed over time. In this paper we summarize what is known of the epidemiology of CP throughout the lifespan, beginning with mortality and life expectancy, then survey what is known of functioning, ability, and quality of life of adults with CP. We conclude by describing a framework for future research on CP and aging that is built around the World Health Organization’s International Classification of Functioning, Disability, and Health (ICF) and suggest specific tools and approaches for conducting that research in a sound manner.
This paper clarifies and updates some issues of life expectancy in cerebral palsy. These are: (1) the definition of life expectancy and how it is calculated; (2) the secular trends that have occurred since the data for the 1998 paper were collected; (3) revised estimates reflecting improvements of some of the analytical methods and statistics provided in that paper; (4) comparison of life expectancies among countries; (5) issues regarding quality of care; and (6) consideration of prospective life expectations in addition to current life expectancy.
Cerebral palsy (CP) is recognized as a lifespan condition. This mapping review identifies outcomes that have been measured in adults with CP between 1970 and 2010 to determine if either the outcomes evaluated or the research methodologies have changed substantially. We performed a literature review. For studies to be included, participants had to be 16 years or older and 80% of the sample had to have a diagnosis of CP. Articles were grouped by decade, and outcomes were categorized using the International Classification of Functioning, Disability and Health (ICF) framework and terminology. Fifty-eight articles were included in the mapping review. Both the number of studies and the types of outcomes investigated increased from 1970 to 2010. Outcomes representing the ICF component of Body Function and Structure were present across the period reviewed, whereas interest in contextual (personal or environmental) factors has primarily emerged since 2000. Gaps were identified by the mapping review. Large age ranges and heterogeneity of sample populations made it difficult to determine if the outcomes reported were due to ageing or the long-term consequences of CP. In addition, most reviewed articles described outcomes categorically, with few papers providing explanations or solutions to reported outcomes.