Health-related quality of life measurement in children and adolescents: a systematic review of generic and disease-specific instruments.

Abstract

To identify currently available generic and disease-specific health-related quality of life (HRQOL) instruments for children and adolescents up to 19 years old, to describe their content, and to review their psychometric properties.
Previous reviews on the subject and a new literature review from 2001 to December 2006 (MEDLINE, the ISI Science Citation Index, HealthSTAR and PsycLit) were used to identify measures of HRQOL for children and adolescents. The characteristics (country of origin, age range, type of respondent, number of dimensions and items, name of the dimensions and condition) and psychometric properties (reliability, validity, and sensitivity to change) of the instruments were assessed following international guidelines published by the Scientific Committee of the Medical Outcomes Trust.
In total, 30 generic and 64 disease-specific instruments were identified, 51 of which were published between 2001 and 2005. Many generic measures cover a core set of basic concepts related to physical, mental and social health, although the number and name of dimensions varies substantially. The lower age limit for self-reported instruments was 5-6 years old. Generic measures developed recently focused on both child self-report and parent-proxy report, although 26% of the disease-specific questionnaires were exclusively addressed to proxy-respondents. Most questionnaires had tested internal consistency (67%) and to a lesser extent test-retest stability (44.7%). Most questionnaires reported construct validity, but few instruments analyzed criterion validity (n = 5), structural validity (n = 15) or sensitivity to change (n = 14).
The development of HRQOL instruments for children and adolescents has continued apace in recent years, particularly with regard to disease-specific questionnaires. Many of the instruments meet accepted standards for psychometric properties, although instrument developers should include children from the beginning of the development process and need to pay particular attention to testing sensitivity to change.

Full text

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Health-Related Quality of Life Measurement in Children and
Adolescents:A Systematic Review of Generic and
Disease-Specific Instruments
Maite Solans, BS,1Sabrina Pane, MPH,1Maria-Dolors Estrada, MD,1Vicky Serra-Sutton, PhD,1
Silvina Berra, MPH,1Michael Herdman, MSc,2,3Jordi Alonso, PhD,3Luis Rajmil, PhD1,3
1Agency for Quality, Research and Assessment in Health (AQuRAHealth), formerly Catalan Agency for Health Technology Assessment and
Research, Barcelona, Spain;2CIBER en Epidemiología y Salud Pública (CIBERESP), Barcelona, Spain;3Institut Municipal d’Investigació Mèdica
(IMIM-Hospital del Mar), Barcelona, Spain
ABSTRACT
Objective: To identify currently available generic and
disease-specific health-related quality of life (HRQOL)
instruments for children and adolescents up to 19 years old,
to describe their content, and to review their psychometric
properties.
Study Design: Previous reviews on the subject and a new
literature review from 2001 to December 2006 (MEDLINE,
the ISI Science Citation Index, HealthSTAR and PsycLit)
were used to identify measures of HRQOL for children and
adolescents. The characteristics (country of origin, age range,
type of respondent, number of dimensions and items, name
of the dimensions and condition) and psychometric proper-
ties (reliability, validity, and sensitivity to change) of the
instruments were assessed following international guidelines
published by the Scientific Committee of the Medical Out-
comes Trust.
Results: In total, 30 generic and 64 disease-specific instru-
ments were identified, 51 of which were published between
2001 and 2005. Many generic measures cover a core set of
basic concepts related to physical, mental and social health,
although the number and name of dimensions varies
substantially. The lower age limit for self-reported instru-
ments was 5–6 years old. Generic measures developed
recently focused on both child self-report and parent-proxy
report, although 26% of the disease-specific questionnaires
were exclusively addressed to proxy-respondents. Most ques-
tionnaires had tested internal consistency (67%) and to a
lesser extent test–retest stability (44.7%). Most question-
naires reported construct validity, but few instruments ana-
lyzed criterion validity (n = 5), structural validity (n = 15) or
sensitivity to change (n = 14).
Conclusions: The development of HRQOL instruments for
children and adolescents has continued apace in recent years,
particularly with regard to disease-specific questionnaires.
Many of the instruments meet accepted standards for psy-
chometric properties, although instrument developers should
include children from the beginning of the development
process and need to pay particular attention to testing sensi-
tivity to change.
Keywords: adolescents, children, health-related quality of
life, literature review, questionnaires.
Introduction
There is a growing interest in assessing health-related
quality of life (HRQOL) in children and adolescents,
not only within the research setting, but also in clinical
practice [1]. As a consequence, a considerable number
of instruments to measure HRQOL in children and
adolescents have now been developed. HRQOL has
been defined as referring to “the physical, psychologi-
cal, and social domains of health, seen as distinct areas
that are influenced by a person’s experiences, beliefs,
expectations, and perceptions” [2]. It is therefore
usually considered to be a multidimensional construct
and its evaluation generally relies on the patient’s sub-
jective evaluation of well-being and/or functioning
within the different domains comprising the overall
construct. Measuring HRQOL is nowadays an impor-
tant outcomes indicator in evaluating health-care inter-
ventions and treatments, in understanding the burden
of disease, in identifying health inequalities, in allocat-
ing health resources, and in epidemiological studies
and health surveys. In clinical practice, it has been
suggested that HRQOL instruments can be useful in
identifying and prioritizing health problems for indi-
vidual patients, facilitating communication between
patients and health-care staff, identifying hidden or
unexpected health problems, as aids to decision-
making, and in monitoring changes in patients’ health
state or in detecting responses to treatment [3].
Address correspondence to: Luis Rajmil, (AQuRAHealth), Roc
Boronat, 81-95, 08005 Barcelona, Spain. E-mails: lrajmil@
aatrm.catsalut.net; lrajmil@imim.es
10.1111/j.1524-4733.2007.00293.x
Volume 11 • Number 4 • 2008
V A L U EI N H E A LT H
742
© 2007, International Society for Pharmacoeconomics and Outcomes Research (ISPOR)1098-3015/08/742 742–764

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Instruments developed to measure HRQOL include
both generic and disease-specific measures. The former
are used to collect information on healthy as well as ill
children, at the population level or in clinical practice,
and allow for the comparison of HRQOL across dif-
ferent conditions and settings and between healthy and
ill children. Disease-specific instruments, on the other
hand, aim to collect information on symptoms or
disease-specific health problems from more specific
populations with a given disease or symptom (e.g.,
pain or aspects of treatment) [1]. Disease-specific
instruments tend to be more sensitive to treatment-
related changes [4].
A literature search identified several reviews of
instruments to measure HRQOL in children and ado-
lescents. The most wide-ranging of these reviews
focused on the conceptual framework [5–7], the use of
HRQOL instruments in clinical trials [8,9], and on
identifying and evaluating all available published
instruments [10–12]. The most complete of these
reviews [11] identified 18 generic instruments and 24
disease-specific measures. Rapid developments in the
HRQOL field, and the increasing number of measures
available, underline the need for a new review.
These reviews also highlighted some limitations of
the then available instruments as well as important
changes in the field [7,10–12]. These included: confu-
sion regarding the definition of quality of life (QOL),
heterogeneity in the number and content of dimensions
[13]; limited availability of disease-specific instru-
ments; discrepancies between child and parent ratings;
limited availability of measures for self completion by
children; the cultural appropriateness of measures for
use in a different context from the original; the advan-
tages and disadvantages of profile and index measures
and the measurement of preference values (utilities) in
pediatric populations.
Advances in health care and health technology
together with rapid developments in the field of
patient-reportedoutcomes
imply the need to update and refine these systematic
reviews of HRQOL instruments and their psychomet-
ric characteristics to help researchers choose the best
instrument for their needs. The aim of this study was
to identify currently available generic and disease-
specific HRQOL instruments for children and adoles-
cents up to 19 years old, to describe their content, and
to assess their psychometric properties.
(PRO)measurements,
Methods
Search Strategy
To identify all available instruments, two search strat-
egies were used. First, we analyzed three previous
reviews (those by Rajmil et al. [10], Eiser et al. [11],
and Harding et al. [12]) to identify all HRQOL instru-
ments for children or adolescents developed or pub-
lished between 1980 and 2000.
To identify HRQOL instruments developed and/or
published between 2001 and December 2006, we
carried out an original search of databases using com-
binations of keywords such as “child” [MeSH] OR
“adolescent” [MeSH] OR adolescent* OR child* OR
teenage* [ti] OR kid* [ti] OR pediatr* OR pediatr*
AND“questionnaires”[mh]
OR “health surveys” OR “quality of life” [majr]
OR “quality of life” [ti] OR “health status” [majr] OR
“health status” [ti] OR “functional status” [ti] OR
“well being” [ti] OR “perceived health status.” Data-
bases searched included MEDLINE, the ISI Science
Citation Index, HealthSTAR and PsycLit. We also
hand-searched references from eligible articles, con-
gress abstract books, and the gray literature, as well as
contacting experts working in the field and consulting
virtual libraries of PRO instruments (ProQolid and
Bibliopro) [14,15]. Searches were restricted to English,
French and Spanish language documents.
NOTadult [mh]
Inclusion and Exclusion Criteria
Documents included for further analysis were those
reporting the development, psychometric assessment
and/or use of instruments measuring QOL, health
status or well being and intended specifically for
children and adolescents up to the age of 19 years.
Instruments could be completed by the children or
adolescents themselves or proxies (parents, caregivers,
or health workers), or both.
Documents reporting on the use of instruments in
pediatric samples were excluded from the analysis if
the measures used were originally designed for use in
adults or the general population. Articles or other
documents reporting the use of functional scales and
symptom checklists, the results of clinical applications
or population studies using HRQOL instruments, and
articles reporting on the cultural adaptation of instru-
ments were also excluded from further analysis.
Instruments were included if they were subjective
measures intended to collect data on QOL, health
status, well-being, and/or functioning.
Procedure
Documents identified by the systematic search were
checked for relevance by three reviewers (M.D.E.,
V.S.S., M.S.) and data from documents considered eli-
gible for inclusion was extracted using a standardized
form. Any discrepancies regarding the relevance of the
article for the review were resolved through consensus
or in consultation with a fourth reviewer (L.R.).
The following characteristics of instruments identi-
fied by the review were recorded: country of origin, age
range, type of respondent (child/adolescent self-report,
parent/proxy, both), number of dimensions and items,
name of the dimensions, psychometric properties
HRQOL Instruments for Children and Adolescents
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(reliability, validity, and sensitivity to change), and
condition, in the case of disease-specific question-
naires.
Analysis
Generic and disease-specific instruments are presented
separately in the results. When determining the
number of instruments, different versions of the same
instrument (e.g., versions for different age groups,
short versions, etc.) were counted as one. Dimensions
in these instruments were analyzed to determine
the extent to which content varied between generic
instruments.
For each instrument included in the review, the
psychometric properties of reliability, validity, and sen-
sitivity to change were evaluated in accordance with
recommendations in the scientific literature on the
desirablecharacteristics
[16,17].
Reliability refers to the extent to which the instru-
ment is free from random error, and is usually assessed
by measuring the scale’s internal consistency and test–
retest reliability [18]. Internal consistency refers to the
fact that all items are homogeneous and measure
the same construct, and test–retest reliability refers to
the reproducibility or stability over time of domain
and overall scores when the conditions of measure-
ment do not change. Minimal standards for reliability
coefficients are usually set at 0.70 for use at group level
and 0.90–0.95 for use at individual level [18–20]. Reli-
ability analysis was categorized as follows: (0) not
reported; (-) reliability is not acceptable in terms of
either internal consistency and/or test–retest (<0.70 in
40% or more of the dimensions); (+) only one type of
reliability (internal consistency or test–retest) has been
tested, with acceptable results; (++) both internal con-
sistency and test–retest stability are acceptable (>0.70
in 70% or more dimensions).
Validity is the extent to which an instrument mea-
sures what it intends to measure [21]. Validity usually
includes the measurement of structural validity, con-
struct validity, and criterion validity. Structural validity
refers to the extent to which the instrument’s structure,
as determined by confirmatory factor analysis, reflects
a priori expectations of a theoretical-conceptual model
based on clinical and biopsychosocial paradigms [16],
and some authors consider it to be part of construct
validity [22]. Construct validity measures the extent to
which the questionnaire confirms a priori hypotheses,
including its capacity to detect expected differences
between groups of subjects (known groups validity) or
associations with other instruments measuring con-
structs which are expected to be correlated (convergent
validity) [16]. Criterion validity refers to the degree to
which scores on the instrument being validated corre-
late with scores on an external marker, which can be
accepted as a “gold standard” [16]. For example, cri-
ofHRQOL instruments
terion validity for a dimension measuring academic
achievement might be tested by examining the rela-
tionship between scores on the dimension and the
results provided in school reports. Validity is assessed
by determining the degree to which hypothesized rela-
tions are observed in practice. Validity was classified
as: (0) not reported; (-) validity is not acceptable in
one or more aspects (structural, construct and/or cri-
terion); (+) one type of validity tested, with acceptable
results; (++) two types of validity tested with accept-
able results; (+++) all three types of validity tested with
acceptable results.
Sensitivity to change refers to the ability of the
questionnaire to detect clinically important changes in
healthstatusorHRQOLovertime[16].Althoughthere
are different statistics to assess sensitivity to change,
such as the standardized response mean and measure-
ment error, in the great majority of the articles reviewed
the effect size was used. We therefore based our evalu-
ation of a questionnaire’s sensitivity to change on this
measure,andconsideredaminimumeffectsizeof0.2as
acceptable.Sensitivitytochangewasassessedas:(0)not
reported; (– sec) assessed, but with negative results or
(+s) assessed with acceptable results.
Results
From previous literature reviews, we identified a total
of 43 generic and disease-specific PRO instruments
published before 2001, which met the study inclusion
criteria. Two generic instruments were excluded
because they were originally developed for use in
adults (the Sickness Impact Profile and the Quality of
Well-Being Scale) and one disease-specific instrument
was excluded because it was considered to be a check-
list (Play Performance Scale for Children).
The search of publications between 2001 and 2006
revealed 1041 documents, which were potentially eli-
gible for further analysis based on their titles and
abstracts. Of these, 870 did not meet the inclusion
criteria: 336 because they reported on clinical applica-
tions and population studies of pediatric question-
naires, 317 because they were not studies of HRQOL
instruments, 111 because they referred to instruments
designed for use in adult subjects, 100 because they
referred to QOL studies but not to instrument devel-
opment or validation (qualitative studies, comparisons
between instruments, adaptations), and 6 because they
were letters or editorials. A total of 171 documents
were reviewed and 51 HRQOL instruments developed
and/or published since 2001 were identified.
Combining the results of the two phases of the
review produced a total of 94 instruments addressed to
pediatric populations. Of these, 30 were generic instru-
ments and 64 were disease-specific. Several of the
instruments (specifically, 13 generic and 14 disease-
specific instruments) included versions for different age
744
Solans et al.

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groups (toddler, child, adolescent) and/or short-form
versions of the original instrument.
Table 1 shows the characteristics of the generic
instruments identified and Table 2 those of the disease-
specific instruments, together with results for the nine
key attributes reviewed.
Generic Instruments
Of the 30 generic HRQOL instruments identified, nine
were published between 2001 and 2006. In regard to
the questionnaires existing in 2001, four new versions
have been developed for different age groups [23–26].
Country of origin. Generic instruments were predomi-
nantly developed in the United States (n = 10) and UK
(n = 7). Only one instrument was developed simulta-
neously in more than one country [27,28], leading to a
version for each country involved.
Age range. The majority of instruments were devel-
oped for children aged 5 years or over. Only two
generic instruments targeted early childhood (0–
5 years) [29,30]. New versions published since 2001
focused particularly on early childhood [23–25].
Respondent. Thirteen
child or adolescent self-report [31–49]; four use only
proxyreports [29,30,50,51];
included both children/adolescent self-report and
proxy responses [23–25,27,28,52–71]. One instru-
ment also collected information from nurses [29].
instrumentsuse exclusively
and 13measures
Dimensions/items. The number of dimensions ranged
between 3 [36] and 17 [38]. The number of items
ranged from 6 [34,35] to 183 [56,57]. Seven question-
naires provide only an overall score and no score by
dimension; the majority provide both an overall score
and a score by dimension [31–33,39,46,50,51,72].
Based on the names of the dimensions (Table 3), the
most commonly measured concepts were self-esteem,
body image and autonomy (n = 13), physical activity
(n = 12), emotional status (n = 11), and school and
leisure (n = 11).
Other characteristics. Illustrative figures (smiley faces,
cartoons, etc.) were included as visual aids in five of
the generic instruments [23,34,35,38,54,58,59,61].
Optional disease-specific modules were available for
four generic instruments [31,53,61,67,68].
Psychometric properties. Among generic instruments,
only 16.7% reported both internal consistency and
test–retest data [24,42–46,56–59,62]; 40% of the
instruments only provided data on internal consis-
tency [23,25,27,28,31,36,47,49,50,52,53,61,67–70,
72];and20% onlyon
[29,34,35,37,38,48,60,63,64]. In all of these cases, the
test–retestreliability
reliability coefficients met accepted standards. In 13%
of cases [30,40,41,55,71], reliability did not meet
accepted standards, and two instruments did not
provide data on either type of reliability [51,65,66].
The majority of the questionnaires reported accept-
able construct validity (83.3%); one instrument did
not fulfill the previously established criteria for con-
struct validity [55], and no data on this type of validity
were provided for three instruments [39,46,47,49,72].
Criterion validity was assessed in only four instru-
ments, with acceptable results in all cases [30,42,
43,50,56–59]. Structural validity using factor analysis
was examined in 23.3% instruments, with satisfactory
results in terms of the fit statistics used [31,42–
45,52,56–59,62,67–70]. Only 10% of instruments
reported data on sensitivity to change, all with accept-
able results [27,28,53,62,67,68].
Disease-specific instruments. A total of 64 disease-
specific HRQOL instruments were identified; 65.6%
were published since 2001. Of the questionnaires
existing in 2001, a new version for a different age
group was developed for one questionnaire [73], and
there were new short versions for two questionnaires
[74–76].
Conditions included. Asthma (n = 10), cancer (n = 8),
and epilepsy (n = 7) were the most frequent conditions
identified in the list of 27 conditions covered by the
disease-specific instruments. From 2001 on, new ques-
tionnaires were developed for a total of 18 conditions.
Country of origin. Disease-specific instruments were
predominantly developed in the United States (n = 22),
UK (n = 10) and Canada (n = 10). Five of the instru-
ments developed since 2001 were developed simulta-
neously in more than one country [77–85].
Age range. Most of the instruments identified were
developed for use in populations aged 5 years or over,
although some could be used in populations less than
5 years (32.8%). Instruments targeting broader age
ranges usually had different versions for different age
groups (e.g., 5–12 and 13–18), and some use a com-
bination of self-reports for older respondents and
proxy reports for younger subjects [86–88]. Instru-
ments developed since 2001 tended to include younger
age groups, with ages as low as 1 and 2 years.
Respondents. Of the disease-specific instruments iden-
tified, 43.7% relied exclusively on child self-reports
[73,73,76,85,89–115], 26.6% only on parent reports
[105,112,116–131] and 29.6% on both child and
proxy reports [74,75,77,79,83,86,87,132–145]. One
instrument also included a nurse-reported version
[132]. Of the instruments developed since 2001, 12
HRQOL Instruments for Children and Adolescents
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Table 1
Description of the generic health-related quality of life instruments for use in pediatric age
Measure
Country
of origin
Age
range
(year)
Respondent
No. of
domains
No. of
items
Dimensions
Reliability
(a)
Validity
(b)
Sensitivity
to change
(c)
1
*16D [37]
Finland
12–15
Self
16
16
Mobility, vision, hearing, breathing,
sleeping, eating, speech, elimination,school and hobbies, friends, physical
appearance, mental function,
discomfort and symptoms, depression,distress and vitality
+
+
0
*17D [38]
8–11
Self
17
17
Mobility, vision, hearing, breathing,
sleeping, eating, speech, elimination, school and hobbies, friends, physical
appearance, discomfort and symptoms,
depression, anxiety, vitality, ability to
concentrate, learning ability and
memory
+
+
0
2
*AUQUEI [54]
France
4–12
Self
4
27
Family life, social life, children’s activities
(school and leisure), health
0
+
0
QUALIN [23]
3 month to 3
Parent
4
34
Behavior, autonomy, environment,
psychological (social) and somatic
+
+
0
3
*CHIP-AE [56,57]
USA
11–17
Self
6
183
Discomfort, disorders, satisfaction with
health, achievement (of age-appropriate
social roles), risks, resilience
++
+++
0
*CHIP-CE/CRF
CHIP-CE/PRF
[58,59]
6–11
Self and Parent
5
45
(self)
76
(parent)
Satisfaction (with self and health),
comfort (emotional and physical
symptoms and limitations), resilience,
risk avoidance, achievement (social roles)
++
+++
0
4
*CHQ [62]
USA
10–18
(self)
5–18
(parent)
Self and Parent
11
87
(self)
98, 50†,
28†
(parent)
Physical functioning, bodily pain, role/
social-physical, general health perception,
role/social-emotional/behavior, mental
health, general behavior, self-esteem,parental emotional impact, parental time
impact, family impact
++
+++
+s
ITQOL [24]
3–4
Parent
10 (and 3
single-item)
103
Infant scales: physical abilities, growth and
development, bodily pain/discomfort,
temperament and moods, general
behavior perceptions, getting along with
others, general health perceptions,
(change in health); Parent scales:
Impact-emotional, impact-time, mental
health, (general health, family cohesion)
++
+
0
5
*CHRIs [55]
USA
5–12
Self and Parent
7
20
Physical function, role function, mental
health, QOL, energy, disease-specific hassles
-
-
0
6
CHSCS-PS [29]
Canada
2–5
Parent and
nurse
10
41
Vision, hearing, speech, mobility, dexterity,
self-care, emotion, learning and
remembering, thinking and problem
solving, pain and discomfort
+
+
0
746
Solans et al.

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7
CLQI [51]
UK
5–16
Parent
Single
12
Total score only
0
+
0
8
*COOP [34,35]
USA
12–21
Self
6
6
Physical, emotional, school work, social
support, family communication, health
habits
+
+
0
9
*CQOL [60]
UK
9–15
Self and Parent
15
15
Activities, appearance, communication,
continence, depression, discomfort,
eating, family, friends, mobility, school,
sight, self-care, sleep, worry
+
+
0
10
*CHRS [31]
USA
9–12
Self
Single scale
17
Total score only
+
++
0
11
DHP-A [48]
USA
12–17
Self
10 (and 3
single-item)
17
Physical, mental, social, general health,
self-esteem, anxiety, depression, pain,
disability, (perceived health, pain,disability)
+
+
0
12
*EHRQL [32,33]
UK
6–11
Self
Single scale
16
Total score only
-
+
0
13
*FSIIR [50]
USA
0–16
Parent
Single scale
43/14†
Total score only
+
++
0
14
*GCQ [39,72]
UK
6–16
Self
Single scale
25
Total score only
+
+
0
15
*HUI Mark 2 [63]
Canada
2–18
12–18
Parent Self
7
7†
Sensation, mobility emotion, cognition,
self-care, pain, fertility
0
+
0
*HUI Mark 3 [64]
2–18
12–18
Parent Self
8
45
Vision, hearing, speech, ambulation,
dexterity, emotion, cognition, pain
+
+
0
HSCS [26]
Canada and
Australia
2.5–5
Parent
12
49
Vision, hearing, speech, mobility, dexterity,
self-care, emotion, learning and
remembering, thinking and problem
solving, pain, general health, behavior
+
+
0
16
*HAY [61]
Holland
7–13
Self and Parent
5
80
Physical functioning, cognitive functioning,
social functioning, physical complaints,
happiness
+
+
0
6–12
Self
4
44†
+
+
0
17
KIDSCREEN [27,28]
INTERNA-
TIONAL:Austria,
France, Germany,
Greece, Holland,
Hungary, Ireland,
Poland, Spain,
Sweden,Switzerland,The
Czech Republic, UK
8–18
Self and Parent
10
5
Single scale
52 27†
10†
KIDSCREEN 52: Physical well-being,
psychological well-being, moods and
emotions, self-perception, autonomy,
parent relation and home life, social
support and peers, school
environment, social acceptance
(bullying), financial resources
KIDSCREEN 27: Physical well-being,
psychological well-being, parent
relations and autonomy, social support
and peers, school environment
+
+
+s
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Table 1
continued
Measure
Country
of origin
Age
range
(year)
Respondent
No. of
domains
No. of
items
Dimensions
Reliability
(a)
Validity
(b)
Sensitivity
to change
(c)
18
*KINDL [53]
Germany
8–16
Self and Parent
6
24
Physical well-being, emotional well-being,
self-esteem, family, friends, school
+
+
+s
4–7
Self and Parent
4
12
Physical well-being, emotional well-being,
self-esteem, family, friends, school
+
0
0
19
*Nordic QOLQ
for Children
[65,66]
Sweden
12–18
(self)
2–18
(parent)
Self and Parent
4
74
Global sphere, external sphere,
interpersonal sphere, personal sphere
0
+
0
20
*PedsQL 4.0
Generic Core
[67,68]
USA
5–18
(self)
2–18
(parent)
Self and Parent
4
23
Physical functioning, emotional
functioning, social functioning, schoolfunctioning
+
++
+s
21
*PIE [40,41]
UK
8–25
Self
8
34
Physical appearance, interference with
activity, disclosure of illness, school/work,
peer rejection, parental behavior,
manipulation, preoccupation with illness,
treatment
-
+
0
22
PQ-LES-Q [46]
USA
6–11
12–17
Self
Single
15
Total score only
++
0
0
23
*QOLP-AV [36]
Canada
14–20
Self
3
54
Being (physical being, psychological being,
spiritual being); belonging (physical
belonging, social belonging, community belonging); becoming (practical becoming,
leisure becoming, growth becoming)
+
+
0
24
QOLQA [49]
Japan
10–15
Self
5
70
Physical, psychological, independence,
social, environmental
+
0
0
25
*TNO-AZL/
DUX-25 [69]
Holland
5–16
Self
4
36/25†
Physical, emotional, social, home
+
++
0
*TACQOL [52,70]
6–15
Self and Parent
7
108
Self: Physical complaints, motor
functioning, autonomy, cognitivefunction, social functioning, positive
emotions, negative emotions Parent:
Pain and symptoms, basic motor
functioning, autonomy, cognitivefunction, social functioning, global
positive emotional functioning, global negative emotional functioning
+
++
0
TAPQOL [25]
1–5
Parent
4
43
Physical functioning: sleeping, appetite,
lung problems, stomach problems, skin
problems, motor functioning; social
functioning: problem behavior, social functioning; cognitive functioning:
communication; emotional functioning;
positive mood, anxiety, liveliness
+
+
0
748
Solans et al.

Page 8

26
TedQL.4 [71]
UK
3–8
Self and Parent
1
22
Total score only
-
+
0
27
TQOLQA [47]
Taiwan
13–15
Self
7
38
Family, residential environment, personal
competence, social relationships, physical
appearance, psychological well-being, pain
+
0
0
28
*VSP-A [42,43]
France
11–17
Self
9 Single
scale
37 12†
Psychological well-being, body image,
physical well-being, vitality, friends, parents, teachers, school performance,
medical staff
++
+++
0
29
*WCHMP [30]
UK
0–5
Parent
10
16
General health status, acute minor illness
status, behavioral status, accident status,
acute significant illness status, hospitaladmission status, immunization status,
chronic illness status, functional health
status, health-related quality of life
-
++
0
30
YQOL [45]
USA
11–18
Self
4 Single
scale
5610†
Self, Relationship, Environment, General
quality of life
++
++
0
*Instruments reviewed by earlier reviews.
†Short versions.
(a) (0) not reported;(-) reliability is not acceptable in terms of one or both aspects (internal consistency and/or test–retest <0.70 in 40% or more of the dimensions);(+) only one type of reliability (internal consistency or test–retest) has been tested,with acceptable
results; (++) reliability is acceptable in both aspects (internal consistency and test–retest stability >0.70 in 70% or more dimensions).
(b) (0) not reported;(-) validity is not acceptable in one or more aspects (structural,construct and/or criterion);(+) only one type of validity has been tested,with acceptable results;(++) two types of validity tested with acceptable results;(+++) all three types of validity
tested with acceptable results.
(c) (0) not reported; (–sec) sensitivity to change has been assessed with negative results or (+s) sensitivity to change has been assessed with acceptable levels.
16D, 16-Dimensional Health-related Quality of Life Measure; 17D, 17-Dimensional Health-related Measure;AUQUEI,Autoquestionnaire Qualité de Vie-Enfant-Imagé; CHIP-AE, Child Health and Illness Profile—Adolescent Edition; CHIP-CE, Child Health and Illness
Profile—Child Edition; CHQ, Child Health Questionnaire; CHRIs, Child Health Rating Inventories; CHRS, Children’s Health Rating Scale; CHSCS-PS,The Comprehensive Health Status Classification System for Pre-school Children; CLQI, Children’s Life Quality Index;
COOP, Dartmouth COOP Functional Health Assessment Charts; CQOL, Child Quality of Life Questionnaire; DHP-A, DUKE Health Profile—Adolescent Version; EHRQL, Exeter Health-Related Quality of Life Measure; FSIIR, Functional Status II (R); GCQ, GenericChildren’s Quality of Life Measure; HAY, How AreYou? HSCS, Health Status Classification System; HUI Mark, Health Utilities Index Mark; ITQOL, Infant/Toddler Quality of Life Questionnaire; KIDSCREEN, Screening for Promotion of Health-Related Quality of Life in Children andAdolescents;KINDL,Fragebogen zur Lebensqualität von Kindern & Judendlichen;PedsQL 4.0,Pediatric Quality of Life Inventory;PIE,Perceived Illness Experience Scale;PQ-LES-Q,Pediatric Quality of Life Enjoyment and Satisfaction Questionnaire;QOLP-AV,
Quality of Life Profile—AdolescentVersion; QOLQA, Quality of Life Questionnaire for Adolescents; QUALIN, Infant Quality of Life;TACQOL,TNO-AZL Child Quality of Life;TAPQOL,TNO-AZL Preschool Children Quality of Life;TedQL, Quality of Life measure for
children aged 3–8 years;TNO-AZL/DUX-25,Dutch ChildrenTNO-AZL Quality of Life Questionnaire;TQOLQA,Taiwanese Quality of Life Questionnaire;VSP-A,Vecú et Sante Perçue de l’Adolescent;WCHMP,Warwick Child Health and Morbidity Profile;YQOL,Youth
Quality of Life Instrument.
HRQOL Instruments for Children and Adolescents
749

Page 9

Table 2
Description of the disease-specific health-related quality of life instruments for use in pediatric age
Measure
Country
of origin
Age
range (year)
Respondent
No. of
domains
No. of
items
Dimensions
Reliability
(a)
Validity
(b)
Sensitivity
to change
(c)
Allergy
1
*AdolRQLQ [73]
USA
12–17
Self
6
25
Practical problems, non–hay fever
symptoms, nose symptoms, eye symptoms, patient-specific activities,
emotions
0
+
+s
PRQLQ [89]
6–12
Self
5
23
Nose symptoms, eye symptoms,
practical problems, other symptoms,
activity limitations
+
+
+s
2
PADQLQ [90]
UK
6–16
Self
3
26
Practical problems, symptoms,
emotional problems
+
+
0
Asthma
3
*AAQOL [91]
Australia
12–17
Self
6
32
Symptoms, medication, physical
activities, emotion, social interaction,
positive effects
++
+
0
4
*AMA [92]
USA
6–12
Self
Single scale
44
Total score only
+
+
0
5
ARQOL [93]
Taiwan
7–13
Self
5
35
Restriction of social life, physical
disturbances from signs and
symptoms, limitations in physical
activity, daily inconveniences in
managing the disease, emotional
distress
++
++
0
6
ASDQ [116]
UK
5–14
Parent
3
17
Disability, nocturnal symptoms,
daytime symptoms
+
0
0
7
*CAQs [94]
UK
A: 4–7
Self
A: 2
A: 14
QOL, distress
A: -
A: +
A: 0
B: 8–11
Self
B: 4
B: 23
Active QOL, passive QOL, distress,
severity
B: +
B: ++
B: 0
C: 12–16
Self
C: 5
C: 46
Active QOL, teenage QOL, distress,
severity, reactivity
C: ++
C: +
C: 0
8
IITG-CASF [117]
USA
2–17
Parent
3
10
Daytime symptoms, nighttime
symptoms, functional limitations
0
+
+s
9
JSCA-QOL v3 [95]
Japan
10–18
Self
5
25
Asthma attack triggers, change in
daily life, family support, satisfaction
with life, restriction in participating
in daily activities
++
+
0
10
LAQCA [96]
USA
5–17
Self
7
71
Physical activities, work activities,
outdoor activities, emotions and
emotional behavior, home care,eating and drinking, miscellaneous
++
0
0
11
PAHOM [115]
USA
7–12
Self
3
7
Symptoms, emotion, activity
0
0
0
750
Solans et al.

Page 10

12
*PAQLQ [74,75]
Canada
7–17
Self and Parent
3/2
23/13†
Activity limitations, symptoms,
emotional status
+
+
+s
Attention-deficit/hyperactivity disorder
13
ADHD IMPACT
MODULE [105]
USA
>15
Parent
2
18
Influence on the child, influence on
the parent-family
+
+
0
Bladder dysfunction
14
PinQ [85]
Hong Kong,
Japan,Australia,
USA, Italy,Turkey,
Germany, Holland,
Belgium Denmark
6–17
Self
7
21
Social relations with peers,
self-esteem, family and home, body
image, independence, mental health,
treatment
+
0
0
Cancer
15
BASES [132]
USA
5–17
Self, Parent
and nurses
5
38/14†
Somatic distress, compliance,
mood/behavior, interactions, activity
+
+
0
16
*ECVNO [97]
Spain
6–18
Self
4
19
Relational insulation, lack, emotional
suffering, obstacles to mix desire
+
+
0
17
MMQOL-YF [81]
UK and USA
8–12
Self
(interviewed)
4
32
Outlook on life/family dinamics, physical
symptoms, physical functioning,
psychological functioning
-
+
0
MMQOL-AF [82]
13–20
Self
7
46
Physical functioning, psychological
functioning, social functioning,
cognitive functioning, body image,
outlook on life, intimate relations
++
+
0
18
*MPQOL [118]
USA
1–18
Parent
3
56
Self-competence, emotional stability,
social competence
+
+
0
19
PCQL-32 [133]
USA
8–18
Self and Parent
5
32
Psychological functioning, social
functioning, cognitive functioning,
physical functioning, disease/
treatment scales
+
+
0
20
PEDQOL [98]
GERMANY
8–18
Self
7
34
Physical functioning, autonomy,
emotional functioning, cognition,
friends, family, body image
-
0
0
21
*POQOLS [119]
USA
3–18
Parent
3
21
Physical function and role
restriction, emotional distress, reaction to current medical treatment
+
+
0
22
QOLCC [134]
Taiwan
7–18
Self and Parent
5
34
Physical function, psychological
function, social function, treatment/
disease-related symptoms, cognitive
function
+
+
0
HRQOL Instruments for Children and Adolescents
751

Page 11

Table 2
continued
Measure
Country
of origin
Age
range (year)
Respondent
No. of
domains
No. of
items
Dimensions
Reliability
(a)
Validity
(b)
Sensitivity
to change
(c)
Cerebral palsy
23
CP Qol Child [139]
UK
9–12
Self
4
52
Physical well-being, social well-being,
emotional well-being, acceptance by
others
++
+
0
4–12
Parent
6
66
Physical well-being, social well-being,
emotional well-being, access to
services, acceptance by others,
primary caregiver health
2–18
Parent
Chronic conditions
24
DISABKIDS
[77,78]
International
Austria, France,
Germany, Greece,
Holland, Sweden
4–16
Self and Parent
6
6†
12†
37
Medication, limitation, emotion,
independence, social inclusion, social
exclusion
+
+
0
Congenital cardiac disease
25
ConQol [107]
UK
A: 8–11
B: 12–16
Self
A: 3
B: 4
A: 31
B: 39
A: symptoms, ability to do activities,
relationships with others B: symptoms,
ability to do activities, relationships
with others, control and coping
+
+
0
Cystic fibrosis
26
CFQ [140]
France
6–13
Self
8
33†
Physical symptoms, emotional
functioning, social functioning, body
image, eating disturbances, treatment
burden, respiratory symptoms,
digestive symptoms
-
+
0
8–13
Parent
11
43
Physical symptoms, emotional
functioning, vitality, school functioning,
body image, eating disturbances,
treatment burden, respiratory
symptoms, digestive symptoms, weight,
health perception
0
0
0
13–18
Self
9
33
Physical functioning, emotions, social
limitations, energy/well-being,
treatment burden, embarrassment,
body image, role, eating disturbances
++
++
+s
8–13
Parent
7
44
Physical functioning, emotions, energy/
well-being, treatment burden, body
image, role, eating disturbances
+
+
+s
Diabetes
27
DIRQ [141]
UK
11–18
Self and Parent
5
—
Identity, cause, consequences,
timeline, control/cure
+
+
0
752
Solans et al.

Page 12

28
DPSMA [142]
USA
13–17
Self and Parent
5
17
Insulin adjustment, dietary
management, glucose monitoring,
recognizing and responding to
glycemic deviation, psychosocial
issues
++
-
0
29
*DQOL-Y [108]
USA
11–18
Self
3
46
Satisfaction, impact, worries
+
+
0
DQOL-Y Short
form [76]
Luxemburg/
Belgium, Canada,
Denmark, Finland,
France, Germany,
Holland, Ireland,
Italy, Japan, Norway,
Portugal,
Macedonia, Spain,
Sweden, Switzerland,
England, Scotland
10–18
Self
4
35†
Impact, parents, worry, satisfaction
+
+
0
Dermatology
30
*CDLQI [109]
UK
3–16
Self
6
10
Symptoms and feelings, leisure,
school or holidays, personal
relationships, sleep, treatment
+
0
0
31
IDQOL [124]
UK
<4
Parent
Single
scale
11
Total score only
+
+
+s
Ear, nose and throat 32
*OM-6 [125,126]
USA
6 month-12
Parent
6
6
Physical suffering, hearing loss,
speech impairment, emotional
distress, activity limitations,
caregiver concerns
+
+
+s
33
SN-5 [127]
USA
2–12
Parent
5
5
Sinus infection, nasal obstruction,
allergy symptoms, emotional
distress, activity limitations
–
+
+s
34
Tonsil and
Adenosil HS
Instrument [128]
USA
2–16
Parent
6
15
Airway and breathing, infection, health-
care utilization, eating and swallowing,cost of care, behavior
++
+++
+s
35
PVRQOL [129]
USA
2–18
Parent
Single
10
Total score only
++
+
0
Epilepsy 36
*CAVE [130]
Spain
<14
Parent
Single
scale
8
Total score only
0
0
0
37
CEQ-P [131]
Australia
4–18
Parent
5
178
Physical function, emotional
well-being, cognitive function, social
function, behavioral function
+
+
0
HRQOL Instruments for Children and Adolescents
753

Page 13

Table 2
continued
Measure
Country
of origin
Age
range (year)
Respondent
No. of
domains
No. of
items
Dimensions
Reliability
(a)
Validity
(b)
Sensitivity
to change
(c)
38
*ICIS [120]
UK
6–17
Parent
4
30
Impact of epilepsy/treatment, impact
on child’s development/adjustment,
impact on parents, impact on family
0
+
0
39
ICND [121]
Canada
2–18
Parent
4
44
Epilepsy, cognition, behavior,
physical/neurologic function
++
+
0
40
*QOLIE-89 [99]
USA
8–18
Self
5
25
Self-concept, home life, school life,
social activities, medicine
0
0
0
*41
QOLIE-AD-48
[135]
USA
11–17
Self
8
48
Epilepsy impact, memory/
concentration, attitudes toward
epilepsy, physical functioning, stigma,
social support, school behavior,
health perceptions
++
++
0
42
QVCE50 [145]
Brazil
6–16
Parent
7
50
Physical, psychological, social,
familiar, cognitive, medical, economical
0
+
0
Hemophilia
43
Hemo-QOL
[79,80,84]
INTERNATIONAL:
France, Germany,
Holland, Italy, Spain,
United Kingdom
A: 4–7
B: 8–12
C: 13–16
4–16
Self and ParentSelf and Parent Self and ParentSelf and Parent
10 1010
Single
A: 21
B: 64
C: 77
8†
Physical health, feeling, attitude,family,
friends, other people, sport and
school, coping, treatment, future,
relationships
Total score only
A: 0
B: +
C: +
+
A: 0
B: +
C: +
+
0000
44
CHO-Klat [100]
Canada
5–18
Self and Parent
8
79
Treatment, physical health, family,
future, feelings, understanding of
hemophilia, other people and other
friends, control over your life
0
0
0
Headache
45
*QLH-Y [136]
Norway
12–18
Self and Parent
4
71
Psychological functioning, functional
status, physical status, social
functioning
+
+
0
Hydrocephalus
46
HOQ [122]
Canada
5–17
Parent
3
51
Physical health, social-emotional
health, cognitive health
++
+
0
Inflammatory bowel disease
47
*Children with
Crohn’s disease
questionnaire
[101]
UK
8–12
12–17
Self
6
88
Disease and treatment, social,
emotional, family, education,
future aspects
0
0
0
48
IMPACT [102]
Canada
9–18
Self
6
33
Bowel, body image, functional/social
impairment, emotional impairment,
tests/treatments, systemic impairment
++
+
0
754
Solans et al.

Page 14

Immune thrombopenic purpura
49
ITP [137]
Canada
1–17
Self and Parent
5 (Self)
6
(parent)
26
CHILD:Treatment side effect,
intervention, disease, activity, family
PARENT: Concerns related to
diagnoses/investigation, treatment/disease monitoring, child’s activities,
interference with daily life, disease
outcome, emotional impacts
0
0
0
50
ITP-QOL [83]
Germany,
Sweden, Italy
Interviewed:
3–7
Self-
administered:
8–18
Self and Parent
8
12
22 81
Treatment, complaints due to
treatment, bleedings, feelings, view,
family, friends, perceived support,
other persons, sport and school,
dealing, hospital and staff
0
0
0
Juvenile arthritis
51
CHAQ [86]
USA
1–19
Self and Parent
8
37
Dressing and grooming, arising, eating,
walking, hygiene, reach, grip, activities
++
+
+s
52
*JAQQ [87]
Canada
2–18
Self and Parent
4
74
Gross motor function, fine motor
function, psychosocial function,
general symptoms
0
+
0
Nasolacrimal duct obstruction
53
NLDO [123]
USA
4–6
Parent
Single
28
Total score only
0
+
0
Neuromuscular disorders
54
*LSIA [103]
Canada
12–19
Self
5
35
General well-being, interpersonal
relationships, personal development,
personal fulfillment, leisure/recreation
+
+
0
Obstructive defecation disorder
55
DDL [104]
Germany
7–15
Self
4
37
Constipation-related, emotional
functioning, social functioning,
treatment/interventions
+
+
0
Obstructive sleep apnea
56
OSA-18 [138]
USA
6 month-12
Self and Parent
5
18
Sleep disturbance, physical suffering,
emotional distress, daytime problems,
caregiver concerns
+
+
+s
Oral health
57
CHILD-OIDP [106]
Thailand
11–12
Self
Single
8
Total score only
+
+
0
58
CPQ
[143,144,160]
Canada
11–14
8–10
Self
4
36
25
Oral symptoms, functional limitations,
emotional well-being, social well-being
++
+
0
6–7
11–14
Parent
4
16†
8†
Oral symptoms, functional limitations,
emotional well-being, social well-being
+
+
0
HRQOL Instruments for Children and Adolescents
755

Page 15

Table 2
continued
Measure
Country
of origin
Age
range (year)
Respondent
No. of
domains
No. of
items
Dimensions
Reliability
(a)
Validity
(b)
Sensitivity
to change
(c)
Pain
59
PATC [110]
Holland
5–15
Self
Single
scale
32
Total score only
+
+
0
Short stature
60
*QOL in Children
with Short Stature
[111]
Israel
8–18
Self
5
45
Academic achievement level, leisure
activities, physical self-esteem,
emotional self-esteem, relationships
with peers and family members
0
0
0
Spine deformities
61
BrQ [112]
Greece
9–18
Self
8
34
General health perception, physical
functioning, emotional functioning,
self-esteem and aesthetics, vitality, school activity, bodily pain, social
functioning
+
+
+
62
*QLPSD [113]
Spain
10–20
Self
5
21
Psychological functioning, sleep
disturbances, body image, back
flexibility, back pain
++
+
0
63
*QOL in Spina
Bifida Q [88]
Canada
5–20
Self and Parent
10
44/47
Social, emotional, intellectual,
financial, medical, independence,
environmental, physical, recreational,
vocational
++
+
0
64
SQLI [114]
USA
10–18
Self
5
5
Physical activity performance, back
pain, self-esteem, moods and feelings
and satisfaction with management
++
+
0
*Instruments covered by earlier reviews.
†Short versions
(a) (0) not reported; (-) reliability is not acceptable in terms of internal consistency and/or test–retest (<0.70 in 40% or more of dimensions); (+) only one type of reliability (internal consistency or test–retest) has been tested, with acceptable results; (++) reliability
is acceptable for both internal consistency and test–retest stability (>0.70 in 70% or more dimensions).
(b) (0) not reported;(-) validity is not acceptable in one or more aspects (structural,construct and/or criterion);(+) only one type of validity has been tested,with acceptable results;(++) two types of validity tested with acceptable results;(+++) all three types of validity
tested with acceptable results.
(c) (0) not reported; (- sec) sensitivity to change has been assessed with negative results or (+s) sensitivity to change has been assessed with acceptable levels.
AAQOL,Adolescent Asthma Quality of Life Questionnaire;ADHD IMPACT MODULE, Life Satisfaction Index for Adolescents with Neuromuscular Disorders;AMA,About My Asthma;ARQOL,Asthma-Related Quality of Life;ASDQ,Asthma Symptoms and Disability
Questionnaire; BASES, Behavioral,Affective and Somatic Experiences Scale; BrQ, Brace Questionnaire; CAQs, Childhood Asthma Questionnaires; CAVE, Escala de Calidad deVida del Niño con Epilepsia; CDLQI, Children’s Dermatology Life Quality Index; CEQ-P, Child
Epilepsy Questionnaire; CFQ, Cystic Fibrosis Questionnaire; CHAQ, Childhood Health Assessment Questionnaire; Child-OIDP, Child-Oral Impact on Daily Performance Index ; CHO-klat, Canadian Hemophilia Outcomes—Kids Life AssessmentTool; ConQOL, Quality
of Life for Children with Congenital Cardiac Disease;CP QOL Child,The Children with Cerebral Palsy Quality of Life Scale;CPQ,Child Perceptions Questionnaire;DDL,Defecation Disorder List;DIRQ,Diabetes-specific Illness Representations Questionnaire;DISABKIDS,
European Quality of Life for Chronic Health Problems; DPSMA, Diabetes Problem Solving Measure for Adolescents; DQOL-Y, Diabetes Quality of Life Measure forYouth; ECVNO, Escala de Calidad deVida para Niños Oncológicos; HAEMO-QOL, Hemophilia Quality
of Life Questionnaire; HOQ, Hydrocephalus Outcome Questionnaire; ICIS, Impact of Childhood Illness Scales; ICND, Impact of Childhood Neurologic Disability Scale; IDQOL, Infant’s Dermatitis QOL Index; IMPACT, Impact Questionnaire; ITG-CASF, Integrated
Therapeutics Group Child Asthma Short Form; ITP, ImmuneThrombopenic Purpura Child Quality of life Questionnaire; ITP-QOL, IdiopathicThrombocytopenic Purpura Quality of Life Questionnaire; JAQQ, Juvenile Arthritis Quality of Life Questionnaire; JSCA-QOL
v3, Quality of Life Questionnaire for Japanese School-aged Children with Asthma; LAQCA, Life Activities Questionnaire for Childhood Asthma; LSIA, Life Satisfaction Index for Adolescents with Neuromuscular Disorders; MMQOL, Minneapolis-Manchester Quality of
Life; MPQOL,The Miami Pediatric Quality of Life Questionnaire; NLDO,The Nasolacrimal Duct Obstruction Questionnaire Score; OM-6, Quality of Life for Children with Otitis Media; OSA-18, Obstructive Sleep Apnea Syndrome; PADQLQ, Pediatric Allergic Disease
Quality of Life Questionnaire; PAHOM, Pediatric Asthma Health Outcome Measure; PAQLQ, Pediatric Asthma Quality of Life Questionnaire; PATC, Pain Assessment Tool for Children; PCQL-32, Pediatric Cancer Quality of Life Inventory; PEDQOL, Self-rating QOLQuestionnaire for Children; PinQ, Quality of Life Measure for Children with Bladder Dysfunction; POQOLS, Pediatric Oncology Quality of Life Scale; PVRQOL, PediatricVoice-Related Quality-of-Life Survey; QLH-Y, Quality of Life Headache inYouth; QLPSD, Quality
of Life Profile for Spine Deformities;QOLCC,Quality of life in Childhood Cancer;QOLIE,Quality of Life in Epilepsy Scale;QVCE50,Qualidade deVida Relacionada à Saúde para Crianças Brasileiras com Epilepsia;RQLQ,Rhinoconjunctivitis Quality of Life Questionnaire;
SN-5, Children with Persistent Sinonasal Symptoms; SQLI, Scoliosis Quality of Life Index,Tonsil and Adenosil HS Instrument,Tonsil and Adenosil Health Status Instrument.
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