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Health-Related Quality of Life Measurement in Children andAdolescents:A Systematic Review of Generic andDisease-Specific Instruments
Maite Solans, BS,1 Sabrina Pane, MPH,1 Maria-Dolors Estrada, MD,1 Vicky Serra-Sutton, PhD,1
Silvina Berra, MPH,1 Michael Herdman, MSc,2,3 Jordi Alonso, PhD,3 Luis Rajmil, PhD1,3
1Agency for Quality, Research and Assessment in Health (AQuRAHealth), formerly Catalan Agency for Health Technology Assessment andResearch, 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 anddisease-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 psychometricproperties.Study Design: Previous reviews on the subject and a newliterature review from 2001 to December 2006 (MEDLINE,the ISI Science Citation Index, HealthSTAR and PsycLit)were used to identify measures of HRQOL for children andadolescents. The characteristics (country of origin, age range,type of respondent, number of dimensions and items, nameof the dimensions and condition) and psychometric proper-ties (reliability, validity, and sensitivity to change) of theinstruments were assessed following international guidelinespublished 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 between2001 and 2005. Many generic measures cover a core set ofbasic 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 developedrecently focused on both child self-report and parent-proxyreport, although 26% of the disease-specific questionnaireswere exclusively addressed to proxy-respondents. Most ques-tionnaires had tested internal consistency (67%) and to alesser 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) orsensitivity to change (n = 14).Conclusions: The development of HRQOL instruments forchildren 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 shouldinclude children from the beginning of the developmentprocess and need to pay particular attention to testing sensi-tivity to change.Keywords: adolescents, children, health-related quality oflife, literature review, questionnaires.
Introduction
There is a growing interest in assessing health-relatedquality of life (HRQOL) in children and adolescents,not only within the research setting, but also in clinicalpractice [1]. As a consequence, a considerable numberof instruments to measure HRQOL in children andadolescents have now been developed. HRQOL hasbeen defined as referring to “the physical, psychologi-cal, and social domains of health, seen as distinct areasthat are influenced by a person’s experiences, beliefs,expectations, and perceptions” [2]. It is therefore
usually considered to be a multidimensional constructand its evaluation generally relies on the patient’s sub-jective evaluation of well-being and/or functioningwithin the different domains comprising the overallconstruct. Measuring HRQOL is nowadays an impor-tant outcomes indicator in evaluating health-care inter-ventions and treatments, in understanding the burdenof disease, in identifying health inequalities, in allocat-ing health resources, and in epidemiological studiesand health surveys. In clinical practice, it has beensuggested that HRQOL instruments can be useful inidentifying and prioritizing health problems for indi-vidual patients, facilitating communication betweenpatients and health-care staff, identifying hidden orunexpected health problems, as aids to decision-making, and in monitoring changes in patients’ healthstate or in detecting responses to treatment [3].
Address correspondence to: Luis Rajmil, (AQuRAHealth), RocBoronat, 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 • 2008V A L U E I N H E A L T H
742 © 2007, International Society for Pharmacoeconomics and Outcomes Research (ISPOR) 1098-3015/08/742 742–764
Instruments developed to measure HRQOL includeboth generic and disease-specific measures. The formerare used to collect information on healthy as well as illchildren, at the population level or in clinical practice,and allow for the comparison of HRQOL across dif-ferent conditions and settings and between healthy andill children. Disease-specific instruments, on the otherhand, aim to collect information on symptoms ordisease-specific health problems from more specificpopulations with a given disease or symptom (e.g.,pain or aspects of treatment) [1]. Disease-specificinstruments tend to be more sensitive to treatment-related changes [4].
A literature search identified several reviews ofinstruments to measure HRQOL in children and ado-lescents. The most wide-ranging of these reviewsfocused on the conceptual framework [5–7], the use ofHRQOL instruments in clinical trials [8,9], and onidentifying and evaluating all available publishedinstruments [10–12]. The most complete of thesereviews [11] identified 18 generic instruments and 24disease-specific measures. Rapid developments in theHRQOL field, and the increasing number of measuresavailable, underline the need for a new review.
These reviews also highlighted some limitations ofthe then available instruments as well as importantchanges 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 bychildren; the cultural appropriateness of measures foruse in a different context from the original; the advan-tages and disadvantages of profile and index measuresand the measurement of preference values (utilities) inpediatric populations.
Advances in health care and health technologytogether with rapid developments in the field ofpatient-reported outcomes (PRO) measurements,imply the need to update and refine these systematicreviews of HRQOL instruments and their psychomet-ric characteristics to help researchers choose the bestinstrument for their needs. The aim of this study wasto identify currently available generic and disease-specific HRQOL instruments for children and adoles-cents up to 19 years old, to describe their content, andto assess their psychometric properties.
Methods
Search StrategyTo identify all available instruments, two search strat-egies were used. First, we analyzed three previousreviews (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/orpublished between 2001 and December 2006, wecarried out an original search of databases using com-binations of keywords such as “child” [MeSH] OR“adolescent” [MeSH] OR adolescent* OR child* ORteenage* [ti] OR kid* [ti] OR pediatr* OR pediatr*AND “questionnaires” [mh] NOT adult [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 ScienceCitation Index, HealthSTAR and PsycLit. We alsohand-searched references from eligible articles, con-gress abstract books, and the gray literature, as well ascontacting experts working in the field and consultingvirtual libraries of PRO instruments (ProQolid andBibliopro) [14,15]. Searches were restricted to English,French and Spanish language documents.
Inclusion and Exclusion CriteriaDocuments included for further analysis were thosereporting the development, psychometric assessmentand/or use of instruments measuring QOL, healthstatus or well being and intended specifically forchildren and adolescents up to the age of 19 years.Instruments could be completed by the children oradolescents themselves or proxies (parents, caregivers,or health workers), or both.
Documents reporting on the use of instruments inpediatric samples were excluded from the analysis ifthe measures used were originally designed for use inadults or the general population. Articles or otherdocuments reporting the use of functional scales andsymptom checklists, the results of clinical applicationsor population studies using HRQOL instruments, andarticles reporting on the cultural adaptation of instru-ments were also excluded from further analysis.
Instruments were included if they were subjectivemeasures intended to collect data on QOL, healthstatus, well-being, and/or functioning.
ProcedureDocuments identified by the systematic search werechecked 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 standardizedform. Any discrepancies regarding the relevance of thearticle for the review were resolved through consensusor in consultation with a fourth reviewer (L.R.).
The following characteristics of instruments identi-fied by the review were recorded: country of origin, agerange, 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 743
(reliability, validity, and sensitivity to change), andcondition, in the case of disease-specific question-naires.
AnalysisGeneric and disease-specific instruments are presentedseparately in the results. When determining thenumber of instruments, different versions of the sameinstrument (e.g., versions for different age groups,short versions, etc.) were counted as one. Dimensionsin these instruments were analyzed to determinethe extent to which content varied between genericinstruments.
For each instrument included in the review, thepsychometric properties of reliability, validity, and sen-sitivity to change were evaluated in accordance withrecommendations in the scientific literature on thedesirable characteristics of HRQOL instruments[16,17].
Reliability refers to the extent to which the instru-ment is free from random error, and is usually assessedby measuring the scale’s internal consistency and test–retest reliability [18]. Internal consistency refers to thefact that all items are homogeneous and measurethe same construct, and test–retest reliability refers tothe reproducibility or stability over time of domainand overall scores when the conditions of measure-ment do not change. Minimal standards for reliabilitycoefficients are usually set at 0.70 for use at group leveland 0.90–0.95 for use at individual level [18–20]. Reli-ability analysis was categorized as follows: (0) notreported; (-) reliability is not acceptable in terms ofeither internal consistency and/or test–retest (<0.70 in40% or more of the dimensions); (+) only one type ofreliability (internal consistency or test–retest) has beentested, with acceptable results; (++) both internal con-sistency and test–retest stability are acceptable (>0.70in 70% or more dimensions).
Validity is the extent to which an instrument mea-sures what it intends to measure [21]. Validity usuallyincludes the measurement of structural validity, con-struct validity, and criterion validity. Structural validityrefers to the extent to which the instrument’s structure,as determined by confirmatory factor analysis, reflectsa priori expectations of a theoretical-conceptual modelbased on clinical and biopsychosocial paradigms [16],and some authors consider it to be part of constructvalidity [22]. Construct validity measures the extent towhich the questionnaire confirms a priori hypotheses,including its capacity to detect expected differencesbetween groups of subjects (known groups validity) orassociations with other instruments measuring con-structs which are expected to be correlated (convergentvalidity) [16]. Criterion validity refers to the degree towhich scores on the instrument being validated corre-late with scores on an external marker, which can beaccepted as a “gold standard” [16]. For example, cri-
terion validity for a dimension measuring academicachievement might be tested by examining the rela-tionship between scores on the dimension and theresults provided in school reports. Validity is assessedby determining the degree to which hypothesized rela-tions are observed in practice. Validity was classifiedas: (0) not reported; (-) validity is not acceptable inone or more aspects (structural, construct and/or cri-terion); (+) one type of validity tested, with acceptableresults; (++) two types of validity tested with accept-able results; (+++) all three types of validity tested withacceptable results.
Sensitivity to change refers to the ability of thequestionnaire to detect clinically important changes inhealth status or HRQOL over time [16]. Although thereare different statistics to assess sensitivity to change,such as the standardized response mean and measure-ment error, in the great majority of the articles reviewedthe effect size was used. We therefore based our evalu-ation of a questionnaire’s sensitivity to change on thismeasure, and considered a minimum effect size of 0.2 asacceptable. Sensitivity to change was assessed as: (0) notreported; (– sec) assessed, but with negative results or(+s) assessed with acceptable results.
Results
From previous literature reviews, we identified a totalof 43 generic and disease-specific PRO instrumentspublished before 2001, which met the study inclusioncriteria. Two generic instruments were excludedbecause they were originally developed for use inadults (the Sickness Impact Profile and the Quality ofWell-Being Scale) and one disease-specific instrumentwas excluded because it was considered to be a check-list (Play Performance Scale for Children).
The search of publications between 2001 and 2006revealed 1041 documents, which were potentially eli-gible for further analysis based on their titles andabstracts. Of these, 870 did not meet the inclusioncriteria: 336 because they reported on clinical applica-tions and population studies of pediatric question-naires, 317 because they were not studies of HRQOLinstruments, 111 because they referred to instrumentsdesigned for use in adult subjects, 100 because theyreferred to QOL studies but not to instrument devel-opment or validation (qualitative studies, comparisonsbetween instruments, adaptations), and 6 because theywere letters or editorials. A total of 171 documentswere reviewed and 51 HRQOL instruments developedand/or published since 2001 were identified.
Combining the results of the two phases of thereview produced a total of 94 instruments addressed topediatric populations. Of these, 30 were generic instru-ments and 64 were disease-specific. Several of theinstruments (specifically, 13 generic and 14 disease-specific instruments) included versions for different age
744 Solans et al.
groups (toddler, child, adolescent) and/or short-formversions of the original instrument.
Table 1 shows the characteristics of the genericinstruments identified and Table 2 those of the disease-specific instruments, together with results for the ninekey attributes reviewed.
Generic InstrumentsOf the 30 generic HRQOL instruments identified, ninewere published between 2001 and 2006. In regard tothe questionnaires existing in 2001, four new versionshave 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 aversion for each country involved.
Age range. The majority of instruments were devel-oped for children aged 5 years or over. Only twogeneric instruments targeted early childhood (0–5 years) [29,30]. New versions published since 2001focused particularly on early childhood [23–25].
Respondent. Thirteen instruments use exclusivelychild or adolescent self-report [31–49]; four use onlyproxy reports [29,30,50,51]; and 13 measuresincluded both children/adolescent self-report andproxy responses [23–25,27,28,52–71]. One instru-ment also collected information from nurses [29].
Dimensions/items. The number of dimensions rangedbetween 3 [36] and 17 [38]. The number of itemsranged from 6 [34,35] to 183 [56,57]. Seven question-naires provide only an overall score and no score bydimension; the majority provide both an overall scoreand a score by dimension [31–33,39,46,50,51,72].Based on the names of the dimensions (Table 3), themost commonly measured concepts were self-esteem,body image and autonomy (n = 13), physical activity(n = 12), emotional status (n = 11), and school andleisure (n = 11).
Other characteristics. Illustrative figures (smiley faces,cartoons, etc.) were included as visual aids in five ofthe generic instruments [23,34,35,38,54,58,59,61].Optional disease-specific modules were available forfour generic instruments [31,53,61,67,68].
Psychometric properties. Among generic instruments,only 16.7% reported both internal consistency andtest–retest data [24,42–46,56–59,62]; 40% of theinstruments only provided data on internal consis-tency [23,25,27,28,31,36,47,49,50,52,53,61,67–70,72]; and 20% only on test–retest reliability[29,34,35,37,38,48,60,63,64]. In all of these cases, the
reliability coefficients met accepted standards. In 13%of cases [30,40,41,55,71], reliability did not meetaccepted standards, and two instruments did notprovide data on either type of reliability [51,65,66].
The majority of the questionnaires reported accept-able construct validity (83.3%); one instrument didnot fulfill the previously established criteria for con-struct validity [55], and no data on this type of validitywere 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 analysiswas examined in 23.3% instruments, with satisfactoryresults in terms of the fit statistics used [31,42–45,52,56–59,62,67–70]. Only 10% of instrumentsreported 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 questionnairesexisting in 2001, a new version for a different agegroup was developed for one questionnaire [73], andthere 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 conditionsidentified in the list of 27 conditions covered by thedisease-specific instruments. From 2001 on, new ques-tionnaires were developed for a total of 18 conditions.
Country of origin. Disease-specific instruments werepredominantly 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 weredeveloped for use in populations aged 5 years or over,although some could be used in populations less than5 years (32.8%). Instruments targeting broader ageranges usually had different versions for different agegroups (e.g., 5–12 and 13–18), and some use a com-bination of self-reports for older respondents andproxy reports for younger subjects [86–88]. Instru-ments developed since 2001 tended to include youngerage 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 andproxy reports [74,75,77,79,83,86,87,132–145]. Oneinstrument also included a nurse-reported version[132]. Of the instruments developed since 2001, 12
HRQOL Instruments for Children and Adolescents 745
Tabl
e1
Des
crip
tion
ofth
ege
neri
che
alth
-rel
ated
qual
ityof
life
inst
rum
ents
for
use
inpe
diat
ric
age
Mea
sure
Cou
ntry
ofor
igin
Age
rang
e(y
ear)
Res
pond
ent
No.
ofdo
mai
nsN
o.of
item
sD
imen
sion
sR
elia
bilit
y(a
)Va
lidity
(b)
Sens
itivi
tyto
chan
ge(c
)
1* 1
6D[3
7]Fi
nlan
d12
–15
Self
1616
Mob
ility
,vis
ion,
hear
ing,
brea
thin
g,sl
eepi
ng,e
atin
g,sp
eech
,elim
inat
ion,
scho
olan
dho
bbie
s,fr
iend
s,ph
ysic
alap
pear
ance
,men
talf
unct
ion,
disc
omfo
rtan
dsy
mpt
oms,
depr
essi
on,
dist
ress
and
vita
lity
++
0
* 17D
[38]
8–11
Self
1717
Mob
ility
,vis
ion,
hear
ing,
brea
thin
g,sl
eepi
ng,e
atin
g,sp
eech
,elim
inat
ion,
scho
olan
dho
bbie
s,fr
iend
s,ph
ysic
alap
pear
ance
,dis
com
fort
and
sym
ptom
s,de
pres
sion
,anx
iety
,vita
lity,
abili
tyto
conc
entr
ate,
lear
ning
abili
tyan
dm
emor
y
++
0
2* A
UQ
UEI
[54]
Fran
ce4–
12Se
lf4
27Fa
mily
life,
soci
allif
e,ch
ildre
n’s
activ
ities
(sch
oola
ndle
isur
e),h
ealth
0+
0
QU
ALI
N[2
3]3
mon
thto
3Pa
rent
434
Beha
vior
,aut
onom
y,en
viro
nmen
t,ps
ycho
logi
cal(
soci
al)
and
som
atic
++
0
3*C
HIP
-AE
[56,
57]
USA
11–1
7Se
lf6
183
Dis
com
fort
,dis
orde
rs,s
atis
fact
ion
with
heal
th,a
chie
vem
ent
(of
age-
appr
opri
ate
soci
alro
les)
,ris
ks,r
esili
ence
++++
+0
* CH
IP-C
E/C
RF
CH
IP-C
E/PR
F[5
8,59
]
6–11
Self
and
Pare
nt5
45 (sel
f)76 (par
ent)
Satis
fact
ion
(with
self
and
heal
th),
com
fort
(em
otio
nala
ndph
ysic
alsy
mpt
oms
and
limita
tions
),re
silie
nce,
risk
avoi
danc
e,ac
hiev
emen
t(s
ocia
lro
les)
++++
+0
4* C
HQ
[62]
USA
10–1
8(s
elf)
5–18
(par
ent)
Self
and
Pare
nt11
87 (sel
f)98
,50
† ,28
†
(par
ent)
Phys
ical
func
tioni
ng,b
odily
pain
,rol
e/so
cial
-phy
sica
l,ge
nera
lhea
lthpe
rcep
tion,
role
/soc
ial-e
mot
iona
l/beh
avio
r,m
enta
lhe
alth
,gen
eral
beha
vior
,sel
f-est
eem
,pa
rent
alem
otio
nali
mpa
ct,p
aren
talt
ime
impa
ct,f
amily
impa
ct
++++
++s
ITQ
OL
[24 ]
3–4
Pare
nt10
(and
3si
ngle
-item
)10
3In
fant
scal
es:p
hysi
cala
bilit
ies,
grow
than
dde
velo
pmen
t,bo
dily
pain
/dis
com
fort
,te
mpe
ram
ent
and
moo
ds,g
ener
albe
havi
orpe
rcep
tions
,get
ting
alon
gw
ithot
hers
,gen
eral
heal
thpe
rcep
tions
,(c
hang
ein
heal
th);
Pare
ntsc
ales
:Im
pact
-em
otio
nal,
impa
ct-t
ime,
men
tal
heal
th,(
gene
ralh
ealth
,fam
ilyco
hesi
on)
+++
0
5* C
HR
Is[5
5]U
SA5–
12Se
lfan
dPa
rent
720
Phys
ical
func
tion,
role
func
tion,
men
tal
heal
th,Q
OL,
ener
gy,d
isea
se-s
peci
ficha
ssle
s
--
0
6C
HSC
S-PS
[29 ]
Can
ada
2–5
Pare
ntan
dnu
rse
1041
Vis
ion,
hear
ing,
spee
ch,m
obili
ty,d
exte
rity
,se
lf-ca
re,e
mot
ion,
lear
ning
and
rem
embe
ring
,thi
nkin
gan
dpr
oble
mso
lvin
g,pa
inan
ddi
scom
fort
++
0
746 Solans et al.
7C
LQI
[51]
UK
5–16
Pare
ntSi
ngle
12To
tals
core
only
0+
0
8* C
OO
P[3
4,35
]U
SA12
–21
Self
66
Phys
ical
,em
otio
nal,
scho
olw
ork,
soci
alsu
ppor
t,fa
mily
com
mun
icat
ion,
heal
thha
bits
++
0
9* C
QO
L[6
0]U
K9–
15Se
lfan
dPa
rent
1515
Act
iviti
es,a
ppea
ranc
e,co
mm
unic
atio
n,co
ntin
ence
,dep
ress
ion,
disc
omfo
rt,
eatin
g,fa
mily
,fri
ends
,mob
ility
,sch
ool,
sigh
t,se
lf-ca
re,s
leep
,wor
ry
++
0
10* C
HR
S[3
1]U
SA9–
12Se
lfSi
ngle
scal
e17
Tota
lsco
reon
ly+
++0
11D
HP-
A[4
8]U
SA12
–17
Self
10(a
nd3
sing
le-it
em)
17Ph
ysic
al,m
enta
l,so
cial
,gen
eral
heal
th,
self-
este
em,a
nxie
ty,d
epre
ssio
n,pa
in,
disa
bilit
y,(p
erce
ived
heal
th,p
ain,
disa
bilit
y)
++
0
12* E
HR
QL
[32,
33]
UK
6–11
Self
Sing
lesc
ale
16To
tals
core
only
-+
0
13*F
SIIR
[50]
USA
0–16
Pare
ntSi
ngle
scal
e43
/14†
Tota
lsco
reon
ly+
++0
14*G
CQ
[39,
72]
UK
6–16
Self
Sing
lesc
ale
25To
tals
core
only
++
0
15*H
UI
Mar
k2
[63]
Can
ada
2–18
12–1
8Pa
rent
Self
77†
Sens
atio
n,m
obili
tyem
otio
n,co
gniti
on,
self-
care
,pai
n,fe
rtili
ty0
+0
*HU
IM
ark
3[6
4]2–
1812
–18
Pare
ntSe
lf8
45V
isio
n,he
arin
g,sp
eech
,am
bula
tion,
dext
erity
,em
otio
n,co
gniti
on,p
ain
++
0
HSC
S[2
6]C
anad
aan
dA
ustr
alia
2.5–
5Pa
rent
1249
Vis
ion,
hear
ing,
spee
ch,m
obili
ty,d
exte
rity
,se
lf-ca
re,e
mot
ion,
lear
ning
and
rem
embe
ring
,thi
nkin
gan
dpr
oble
mso
lvin
g,pa
in,g
ener
alhe
alth
,beh
avio
r
++
0
16* H
AY[6
1]H
olla
nd7–
13Se
lfan
dPa
rent
580
Phys
ical
func
tioni
ng,c
ogni
tive
func
tioni
ng,
soci
alfu
nctio
ning
,phy
sica
lcom
plai
nts,
happ
ines
s
++
0
6–12
Self
444
†+
+0
17K
IDSC
REE
N[2
7,28
]IN
TER
NA
-T
ION
AL:
Aus
tria
,Fr
ance
,Ger
man
y,G
reec
e,H
olla
nd,
Hun
gary
,Ire
land
,Po
land
,Spa
in,
Swed
en,
Switz
erla
nd,T
heC
zech
Rep
ublic
,U
K
8–18
Self
and
Pare
nt10 5 Si
ngle
scal
e
52 27†
10†
KID
SCR
EEN
52:P
hysi
calw
ell-b
eing
,ps
ycho
logi
calw
ell-b
eing
,moo
dsan
dem
otio
ns,s
elf-p
erce
ptio
n,au
tono
my,
pare
ntre
latio
nan
dho
me
life,
soci
alsu
ppor
tan
dpe
ers,
scho
olen
viro
nmen
t,so
cial
acce
ptan
ce(b
ully
ing)
,fina
ncia
lres
ourc
esK
IDSC
REE
N27
:Phy
sica
lwel
l-bei
ng,
psyc
holo
gica
lwel
l-bei
ng,p
aren
tre
latio
nsan
dau
tono
my,
soci
alsu
ppor
tan
dpe
ers,
scho
olen
viro
nmen
t
++
+s
HRQOL Instruments for Children and Adolescents 747
Tabl
e1
cont
inue
d
Mea
sure
Cou
ntry
ofor
igin
Age
rang
e(y
ear)
Res
pond
ent
No.
ofdo
mai
nsN
o.of
item
sD
imen
sion
sR
elia
bilit
y(a
)Va
lidity
(b)
Sens
itivi
tyto
chan
ge(c
)
18* K
IND
L[5
3]G
erm
any
8–16
Self
and
Pare
nt6
24Ph
ysic
alw
ell-b
eing
,em
otio
nalw
ell-b
eing
,se
lf-es
teem
,fam
ily,f
rien
ds,s
choo
l+
++s
4–7
Self
and
Pare
nt4
12Ph
ysic
alw
ell-b
eing
,em
otio
nalw
ell-b
eing
,se
lf-es
teem
,fam
ily,f
rien
ds,s
choo
l+
00
19*N
ordi
cQ
OLQ
for
Chi
ldre
n[6
5,66
]
Swed
en12
–18
(sel
f)2–
18(p
aren
t)
Self
and
Pare
nt4
74G
loba
lsph
ere,
exte
rnal
sphe
re,
inte
rper
sona
lsph
ere,
pers
onal
sphe
re0
+0
20* P
edsQ
L4.
0G
ener
icC
ore
[67,
68]
USA
5–18
(sel
f)2–
18(p
aren
t)
Self
and
Pare
nt4
23Ph
ysic
alfu
nctio
ning
,em
otio
nal
func
tioni
ng,s
ocia
lfun
ctio
ning
,sch
ool
func
tioni
ng
+++
+s
21* P
IE[4
0,41
]U
K8–
25Se
lf8
34Ph
ysic
alap
pear
ance
,int
erfe
renc
ew
ithac
tivity
,dis
clos
ure
ofill
ness
,sch
ool/w
ork,
peer
reje
ctio
n,pa
rent
albe
havi
or,
man
ipul
atio
n,pr
eocc
upat
ion
with
illne
ss,
trea
tmen
t
-+
0
22PQ
-LES
-Q[4
6 ]U
SA6–
1112
–17
Self
Sing
le15
Tota
lsco
reon
ly++
00
23*Q
OLP
-AV
[36]
Can
ada
14–2
0Se
lf3
54Be
ing
(phy
sica
lbei
ng,p
sych
olog
ical
bein
g,sp
iritu
albe
ing)
;bel
ongi
ng(p
hysi
cal
belo
ngin
g,so
cial
belo
ngin
g,co
mm
unity
belo
ngin
g);b
ecom
ing
(pra
ctic
albe
com
ing,
leis
ure
beco
min
g,gr
owth
beco
min
g)
++
0
24Q
OLQ
A[4
9 ]Ja
pan
10–1
5Se
lf5
70Ph
ysic
al,p
sych
olog
ical
,ind
epen
denc
e,so
cial
,env
iron
men
tal
+0
0
25*T
NO
-AZ
L/D
UX
-25
[69]
Hol
land
5–16
Self
436
/25†
Phys
ical
,em
otio
nal,
soci
al,h
ome
+++
0
* TA
CQ
OL
[52,
70]
6–15
Self
and
Pare
nt7
108
Self:
Phys
ical
com
plai
nts,
mot
orfu
nctio
ning
,aut
onom
y,co
gniti
vefu
nctio
n,so
cial
func
tioni
ng,p
ositi
veem
otio
ns,n
egat
ive
emot
ions
Pare
nt:
Pain
and
sym
ptom
s,ba
sic
mot
orfu
nctio
ning
,aut
onom
y,co
gniti
vefu
nctio
n,so
cial
func
tioni
ng,g
loba
lpo
sitiv
eem
otio
nalf
unct
ioni
ng,g
loba
lne
gativ
eem
otio
nalf
unct
ioni
ng
+++
0
TAPQ
OL
[25 ]
1–5
Pare
nt4
43Ph
ysic
alfu
nctio
ning
:sle
epin
g,ap
petit
e,lu
ngpr
oble
ms,
stom
ach
prob
lem
s,sk
inpr
oble
ms,
mot
orfu
nctio
ning
;soc
ial
func
tioni
ng:p
robl
embe
havi
or,s
ocia
lfu
nctio
ning
;cog
nitiv
efu
nctio
ning
:co
mm
unic
atio
n;em
otio
nalf
unct
ioni
ng;
posi
tive
moo
d,an
xiet
y,liv
elin
ess
++
0
748 Solans et al.
26Te
dQL.
4[7
1]U
K3–
8Se
lfan
dPa
rent
122
Tota
lsco
reon
ly-
+0
27T
QO
LQA
[47 ]
Taiw
an13
–15
Self
738
Fam
ily,r
esid
entia
lenv
iron
men
t,pe
rson
alco
mpe
tenc
e,so
cial
rela
tions
hips
,phy
sica
lap
pear
ance
,psy
chol
ogic
alw
ell-b
eing
,pai
n
+0
0
28* V
SP-A
[42,
43]
Fran
ce11
–17
Self
9Si
ngle
scal
e37 12
†Ps
ycho
logi
calw
ell-b
eing
,bod
yim
age,
phys
ical
wel
l-bei
ng,v
italit
y,fr
iend
s,pa
rent
s,te
ache
rs,s
choo
lper
form
ance
,m
edic
alst
aff
++++
+0
29* W
CH
MP
[30]
UK
0–5
Pare
nt10
16G
ener
alhe
alth
stat
us,a
cute
min
orill
ness
stat
us,b
ehav
iora
lsta
tus,
acci
dent
stat
us,
acut
esi
gnifi
cant
illne
ssst
atus
,hos
pita
lad
mis
sion
stat
us,i
mm
uniz
atio
nst
atus
,ch
roni
cill
ness
stat
us,f
unct
iona
lhea
lthst
atus
,hea
lth-r
elat
edqu
ality
oflif
e
-++
0
30Y
QO
L[4
5 ]U
SA11
–18
Self
4Si
ngle
scal
e56 10
†Se
lf,R
elat
ions
hip,
Envi
ronm
ent,
Gen
eral
qual
ityof
life
++++
0
*Ins
trum
ents
revi
ewed
byea
rlie
rre
view
s.† S
hort
vers
ions
.(a
)(0
)no
tre
port
ed;(
-)re
liabi
lity
isno
tac
cept
able
inte
rms
ofon
eor
both
aspe
cts
(inte
rnal
cons
iste
ncy
and/
orte
st–r
etes
t<0
.70
in40
%or
mor
eof
the
dim
ensi
ons)
;(+)
only
one
type
ofre
liabi
lity
(inte
rnal
cons
iste
ncy
orte
st–r
etes
t)ha
sbe
ente
sted
,with
acce
ptab
lere
sults
;(++
)re
liabi
lity
isac
cept
able
inbo
thas
pect
s(in
tern
alco
nsis
tenc
yan
dte
st–r
etes
tst
abili
ty>0
.70
in70
%or
mor
edi
men
sion
s).
(b)
(0)
not
repo
rted
;(-)
valid
ityis
not
acce
ptab
lein
one
orm
ore
aspe
cts
(str
uctu
ral,
cons
truc
tan
d/or
crite
rion
);(+
)on
lyon
ety
peof
valid
ityha
sbe
ente
sted
,with
acce
ptab
lere
sults
;(++
)tw
oty
pes
ofva
lidity
test
edw
ithac
cept
able
resu
lts;(
+++)
allt
hree
type
sof
valid
ityte
sted
with
acce
ptab
lere
sults
.(c
)(0
)no
tre
port
ed;(
–sec
)se
nsiti
vity
toch
ange
has
been
asse
ssed
with
nega
tive
resu
ltsor
(+s)
sens
itivi
tyto
chan
geha
sbe
enas
sess
edw
ithac
cept
able
leve
ls.
16D
,16-
Dim
ensi
onal
Hea
lth-r
elat
edQ
ualit
yof
Life
Mea
sure
;17D
,17-
Dim
ensi
onal
Hea
lth-r
elat
edM
easu
re;A
UQ
UEI
,Aut
oque
stio
nnai
reQ
ualit
éde
Vie
-Enf
ant-
Imag
é;C
HIP
-AE,
Chi
ldH
ealth
and
Illne
ssPr
ofile
—A
dole
scen
tEd
ition
;CH
IP-C
E,C
hild
Hea
lthan
dIll
ness
Profi
le—
Chi
ldEd
ition
;CH
Q,C
hild
Hea
lthQ
uest
ionn
aire
;CH
RIs
,Chi
ldH
ealth
Rat
ing
Inve
ntor
ies;
CH
RS,
Chi
ldre
n’s
Hea
lthR
atin
gSc
ale;
CH
SCS-
PS,T
heC
ompr
ehen
sive
Hea
lthSt
atus
Cla
ssifi
catio
nSy
stem
for
Pre-
scho
olC
hild
ren;
CLQ
I,C
hild
ren’
sLi
feQ
ualit
yIn
dex;
CO
OP,
Dar
tmou
thC
OO
PFu
nctio
nalH
ealth
Ass
essm
ent
Cha
rts;
CQ
OL,
Chi
ldQ
ualit
yof
Life
Que
stio
nnai
re;D
HP-
A,D
UK
EH
ealth
Profi
le—
Ado
lesc
entV
ersi
on;E
HR
QL,
Exet
erH
ealth
-Rel
ated
Qua
lity
ofLi
feM
easu
re;F
SIIR
,Fun
ctio
nalS
tatu
sII
(R);
GC
Q,G
ener
icC
hild
ren’
sQ
ualit
yof
Life
Mea
sure
;HAY
,How
Are
You?
HSC
S,H
ealth
Stat
usC
lass
ifica
tion
Syst
em;H
UIM
ark,
Hea
lthU
tiliti
esIn
dex
Mar
k;IT
QO
L,In
fant
/Tod
dler
Qua
lity
ofLi
feQ
uest
ionn
aire
;KID
SCR
EEN
,Scr
eeni
ngfo
rPr
omot
ion
ofH
ealth
-Rel
ated
Qua
lity
ofLi
fein
Chi
ldre
nan
dA
dole
scen
ts;K
IND
L,Fr
ageb
ogen
zur
Lebe
nsqu
alitä
tvo
nK
inde
rn&
Jude
ndlic
hen;
Peds
QL
4.0,
Pedi
atri
cQ
ualit
yof
Life
Inve
ntor
y;PI
E,Pe
rcei
ved
Illne
ssEx
peri
ence
Scal
e;PQ
-LES
-Q,P
edia
tric
Qua
lity
ofLi
feEn
joym
ent
and
Satis
fact
ion
Que
stio
nnai
re;Q
OLP
-AV,
Qua
lity
ofLi
fePr
ofile
—A
dole
scen
tVer
sion
;QO
LQA
,Qua
lity
ofLi
feQ
uest
ionn
aire
for
Ado
lesc
ents
;QU
ALI
N,I
nfan
tQ
ualit
yof
Life
;TA
CQ
OL,
TN
O-A
ZL
Chi
ldQ
ualit
yof
Life
;TA
PQO
L,T
NO
-AZ
LPr
esch
oolC
hild
ren
Qua
lity
ofLi
fe;T
edQ
L,Q
ualit
yof
Life
mea
sure
for
child
ren
aged
3–8
year
s;T
NO
-AZ
L/D
UX
-25,
Dut
chC
hild
ren
TN
O-A
ZL
Qua
lity
ofLi
feQ
uest
ionn
aire
;TQ
OLQ
A,T
aiw
anes
eQ
ualit
yof
Life
Que
stio
nnai
re;V
SP-A
,Vec
úet
Sant
ePe
rçue
del’A
dole
scen
t;W
CH
MP,
War
wic
kC
hild
Hea
lthan
dM
orbi
dity
Profi
le;Y
QO
L,Yo
uth
Qua
lity
ofLi
feIn
stru
men
t.
HRQOL Instruments for Children and Adolescents 749
Tabl
e2
Des
crip
tion
ofth
edi
seas
e-sp
ecifi
che
alth
-rel
ated
qual
ityof
life
inst
rum
ents
for
use
inpe
diat
ric
age
Mea
sure
Cou
ntry
ofor
igin
Age
rang
e(y
ear)
Res
pond
ent
No.
ofdo
mai
nsN
o.of
item
sD
imen
sion
sR
elia
bilit
y(a
)Va
lidity
(b)
Sens
itivi
tyto
chan
ge(c
)
Alle
rgy
1* A
dolR
QLQ
[73]
USA
12–1
7Se
lf6
25Pr
actic
alpr
oble
ms,
non–
hay
feve
rsy
mpt
oms,
nose
sym
ptom
s,ey
esy
mpt
oms,
patie
nt-s
peci
ficac
tiviti
es,
emot
ions
0+
+s
PRQ
LQ[8
9 ]6–
12Se
lf5
23N
ose
sym
ptom
s,ey
esy
mpt
oms,
prac
tical
prob
lem
s,ot
her
sym
ptom
s,ac
tivity
limita
tions
++
+s
2PA
DQ
LQ[9
0 ]U
K6–
16Se
lf3
26Pr
actic
alpr
oble
ms,
sym
ptom
s,em
otio
nalp
robl
ems
++
0
Ast
hma
3*A
AQ
OL
[91]
Aus
tral
ia12
–17
Self
632
Sym
ptom
s,m
edic
atio
n,ph
ysic
alac
tiviti
es,e
mot
ion,
soci
alin
tera
ctio
n,po
sitiv
eef
fect
s
+++
0
4* A
MA
[92]
USA
6–12
Self
Sing
lesc
ale
44To
tals
core
only
++
0
5A
RQ
OL
[93]
Taiw
an7–
13Se
lf5
35R
estr
ictio
nof
soci
allif
e,ph
ysic
aldi
stur
banc
esfr
omsi
gns
and
sym
ptom
s,lim
itatio
nsin
phys
ical
activ
ity,d
aily
inco
nven
ienc
esin
man
agin
gth
edi
seas
e,em
otio
nal
dist
ress
++++
0
6A
SDQ
[116
]U
K5–
14Pa
rent
317
Dis
abili
ty,n
octu
rnal
sym
ptom
s,da
ytim
esy
mpt
oms
+0
0
7*C
AQ
s[9
4]U
KA
:4–
7Se
lfA
:2A
:14
QO
L,di
stre
ssA
:-A
:+A
:0B:
8–11
Self
B:4
B:23
Act
ive
QO
L,pa
ssiv
eQ
OL,
dist
ress
,se
veri
tyB:
+B:
++B:
0
C:1
2–16
Self
C:5
C:4
6A
ctiv
eQ
OL,
teen
age
QO
L,di
stre
ss,
seve
rity
,rea
ctiv
ityC
:++
C:+
C:0
8IIT
G-C
ASF
[117
]U
SA2–
17Pa
rent
310
Day
time
sym
ptom
s,ni
ghtt
ime
sym
ptom
s,fu
nctio
nall
imita
tions
0+
+s
9JS
CA
-QO
Lv3
[95]
Japa
n10
–18
Self
525
Ast
hma
atta
cktr
igge
rs,c
hang
ein
daily
life,
fam
ilysu
ppor
t,sa
tisfa
ctio
nw
ithlif
e,re
stri
ctio
nin
part
icip
atin
gin
daily
activ
ities
+++
0
10LA
QC
A[9
6 ]U
SA5–
17Se
lf7
71Ph
ysic
alac
tiviti
es,w
ork
activ
ities
,ou
tdoo
rac
tiviti
es,e
mot
ions
and
emot
iona
lbeh
avio
r,ho
me
care
,ea
ting
and
drin
king
,mis
cella
neou
s
++0
0
11PA
HO
M[1
15]
USA
7–12
Self
37
Sym
ptom
s,em
otio
n,ac
tivity
00
0
750 Solans et al.
12* P
AQ
LQ[7
4,75
]C
anad
a7–
17Se
lfan
dPa
rent
3/2
23/1
3†A
ctiv
itylim
itatio
ns,s
ympt
oms,
emot
iona
lsta
tus
++
+s
Att
entio
n-de
ficit/
hype
ract
ivity
diso
rder
13A
DH
DIM
PAC
TM
OD
ULE
[105
]U
SA>1
5Pa
rent
218
Influ
ence
onth
ech
ild,i
nflue
nce
onth
epa
rent
-fam
ily+
+0
Blad
der
dysf
unct
ion
14Pi
nQ[8
5]H
ong
Kon
g,Ja
pan,
Aus
tral
ia,
USA
,Ita
ly,Tu
rkey
,G
erm
any,
Hol
land
,Be
lgiu
mD
enm
ark
6–17
Self
721
Soci
alre
latio
nsw
ithpe
ers,
self-
este
em,f
amily
and
hom
e,bo
dyim
age,
inde
pend
ence
,men
talh
ealth
,tr
eatm
ent
+0
0
Can
cer
15B
ASE
S[1
32]
USA
5–17
Self,
Pare
ntan
dnu
rses
538
/14†
Som
atic
dist
ress
,com
plia
nce,
moo
d/be
havi
or,i
nter
actio
ns,a
ctiv
ity+
+0
16*E
CV
NO
[97]
Spai
n6–
18Se
lf4
19R
elat
iona
lins
ulat
ion,
lack
,em
otio
nal
suffe
ring
,obs
tacl
esto
mix
desi
re+
+0
17M
MQ
OL-
YF
[81]
UK
and
USA
8–12
Self
(inte
rvie
wed
)4
32O
utlo
okon
life/
fam
ilydi
nam
ics,
phys
ical
sym
ptom
s,ph
ysic
alfu
nctio
ning
,ps
ycho
logi
calf
unct
ioni
ng
-+
0
MM
QO
L-A
F[8
2 ]13
–20
Self
746
Phys
ical
func
tioni
ng,p
sych
olog
ical
func
tioni
ng,s
ocia
lfun
ctio
ning
,co
gniti
vefu
nctio
ning
,bod
yim
age,
outlo
okon
life,
intim
ate
rela
tions
+++
0
18* M
PQO
L[1
18]
USA
1–18
Pare
nt3
56Se
lf-co
mpe
tenc
e,em
otio
nals
tabi
lity,
soci
alco
mpe
tenc
e+
+0
19PC
QL-
32[1
33]
USA
8–18
Self
and
Pare
nt5
32Ps
ycho
logi
calf
unct
ioni
ng,s
ocia
lfu
nctio
ning
,cog
nitiv
efu
nctio
ning
,ph
ysic
alfu
nctio
ning
,dis
ease
/tr
eatm
ent
scal
es
++
0
20PE
DQ
OL
[98 ]
GER
MA
NY
8–18
Self
734
Phys
ical
func
tioni
ng,a
uton
omy,
emot
iona
lfun
ctio
ning
,cog
nitio
n,fr
iend
s,fa
mily
,bod
yim
age
-0
0
21* P
OQ
OLS
[119
]U
SA3–
18Pa
rent
321
Phys
ical
func
tion
and
role
rest
rict
ion,
emot
iona
ldis
tres
s,re
actio
nto
curr
ent
med
ical
trea
tmen
t
++
0
22Q
OLC
C[1
34]
Taiw
an7–
18Se
lfan
dPa
rent
534
Phys
ical
func
tion,
psyc
holo
gica
lfu
nctio
n,so
cial
func
tion,
trea
tmen
t/di
seas
e-re
late
dsy
mpt
oms,
cogn
itive
func
tion
++
0
HRQOL Instruments for Children and Adolescents 751
Tabl
e2
cont
inue
d
Mea
sure
Cou
ntry
ofor
igin
Age
rang
e(y
ear)
Res
pond
ent
No.
ofdo
mai
nsN
o.of
item
sD
imen
sion
sR
elia
bilit
y(a
)Va
lidity
(b)
Sens
itivi
tyto
chan
ge(c
)
Cer
ebra
lpal
sy23
CP
Qol
Chi
ld[1
39]
UK
9–12
Self
452
Phys
ical
wel
l-bei
ng,s
ocia
lwel
l-bei
ng,
emot
iona
lwel
l-bei
ng,a
ccep
tanc
eby
othe
rs
+++
0
4–12
Pare
nt6
66Ph
ysic
alw
ell-b
eing
,soc
ialw
ell-b
eing
,em
otio
nalw
ell-b
eing
,acc
ess
tose
rvic
es,a
ccep
tanc
eby
othe
rs,
prim
ary
care
give
rhe
alth
2–18
Pare
nt
Chr
onic
cond
ition
s24
DIS
ABK
IDS
[77,
78]
Inte
rnat
iona
lA
ustr
ia,F
ranc
e,G
erm
any,
Gre
ece,
Hol
land
,Sw
eden
4–16
Self
and
Pare
nt6
6†
12†
37
Med
icat
ion,
limita
tion,
emot
ion,
inde
pend
ence
,soc
iali
nclu
sion
,soc
ial
excl
usio
n
++
0
Con
geni
talc
ardi
acdi
seas
e25
Con
Qol
[107
]U
KA
:8–1
1B:
12–1
6Se
lfA
:3B:
4A
:31
B:39
A:s
ympt
oms,
abili
tyto
doac
tiviti
es,
rela
tions
hips
with
othe
rsB:
sym
ptom
s,ab
ility
todo
activ
ities
,rel
atio
nshi
psw
ithot
hers
,con
trol
and
copi
ng
++
0
Cys
ticfib
rosi
s26
CFQ
[140
]Fr
ance
6–13
Self
833
†Ph
ysic
alsy
mpt
oms,
emot
iona
lfu
nctio
ning
,soc
ialf
unct
ioni
ng,b
ody
imag
e,ea
ting
dist
urba
nces
,tre
atm
ent
burd
en,r
espi
rato
rysy
mpt
oms,
dige
stiv
esy
mpt
oms
-+
0
8–13
Pare
nt11
43Ph
ysic
alsy
mpt
oms,
emot
iona
lfu
nctio
ning
,vita
lity,
scho
olfu
nctio
ning
,bo
dyim
age,
eatin
gdi
stur
banc
es,
trea
tmen
tbu
rden
,res
pira
tory
sym
ptom
s,di
gest
ive
sym
ptom
s,w
eigh
t,he
alth
perc
eptio
n
00
0
13–1
8Se
lf9
33Ph
ysic
alfu
nctio
ning
,em
otio
ns,s
ocia
llim
itatio
ns,e
nerg
y/w
ell-b
eing
,tr
eatm
ent
burd
en,e
mba
rras
smen
t,bo
dyim
age,
role
,eat
ing
dist
urba
nces
++++
+s
8–13
Pare
nt7
44Ph
ysic
alfu
nctio
ning
,em
otio
ns,e
nerg
y/w
ell-b
eing
,tre
atm
ent
burd
en,b
ody
imag
e,ro
le,e
atin
gdi
stur
banc
es
++
+s
Dia
bete
s27
DIR
Q[1
41]
UK
11–1
8Se
lfan
dPa
rent
5—
Iden
tity,
caus
e,co
nseq
uenc
es,
timel
ine,
cont
rol/c
ure
++
0
752 Solans et al.
28D
PSM
A[1
42]
USA
13–1
7Se
lfan
dPa
rent
517
Insu
linad
just
men
t,di
etar
ym
anag
emen
t,gl
ucos
em
onito
ring
,re
cogn
izin
gan
dre
spon
ding
togl
ycem
icde
viat
ion,
psyc
hoso
cial
issu
es
++-
0
29* D
QO
L-Y
[108
]U
SA11
–18
Self
346
Satis
fact
ion,
impa
ct,w
orri
es+
+0
DQ
OL-
YSh
ort
form
[76]
Luxe
mbu
rg/
Belg
ium
,Can
ada,
Den
mar
k,Fi
nlan
d,Fr
ance
,Ger
man
y,H
olla
nd,I
rela
nd,
Ital
y,Ja
pan,
Nor
way
,Po
rtug
al,
Mac
edon
ia,S
pain
,Sw
eden
,Sw
itzer
land
,En
glan
d,Sc
otla
nd
10–1
8Se
lf4
35†
Impa
ct,p
aren
ts,w
orry
,sat
isfa
ctio
n+
+0
Der
mat
olog
y30
*CD
LQI
[109
]U
K3–
16Se
lf6
10Sy
mpt
oms
and
feel
ings
,lei
sure
,sc
hool
orho
liday
s,pe
rson
alre
latio
nshi
ps,s
leep
,tre
atm
ent
+0
0
31ID
QO
L[1
24]
UK
<4Pa
rent
Sing
lesc
ale
11To
tals
core
only
++
+s
Ear,
nose
and
thro
at32
*OM
-6[1
25,1
26]
USA
6m
onth
-12
Pare
nt6
6Ph
ysic
alsu
fferi
ng,h
eari
nglo
ss,
spee
chim
pair
men
t,em
otio
nal
dist
ress
,act
ivity
limita
tions
,ca
regi
ver
conc
erns
++
+s
33SN
-5[1
27]
USA
2–12
Pare
nt5
5Si
nus
infe
ctio
n,na
salo
bstr
uctio
n,al
lerg
ysy
mpt
oms,
emot
iona
ldi
stre
ss,a
ctiv
itylim
itatio
ns
–+
+s
34To
nsil
and
Ade
nosi
lHS
Inst
rum
ent
[128
]
USA
2–16
Pare
nt6
15A
irw
ayan
dbr
eath
ing,
infe
ctio
n,he
alth
-ca
reut
iliza
tion,
eatin
gan
dsw
allo
win
g,co
stof
care
,beh
avio
r
++++
++s
35PV
RQ
OL
[129
]U
SA2–
18Pa
rent
Sing
le10
Tota
lsco
reon
ly++
+0
Epile
psy
36* C
AV
E[1
30]
Spai
n<1
4Pa
rent
Sing
lesc
ale
8To
tals
core
only
00
0
37C
EQ-P
[131
]A
ustr
alia
4–18
Pare
nt5
178
Phys
ical
func
tion,
emot
iona
lw
ell-b
eing
,cog
nitiv
efu
nctio
n,so
cial
func
tion,
beha
vior
alfu
nctio
n
++
0
HRQOL Instruments for Children and Adolescents 753
Tabl
e2
cont
inue
d
Mea
sure
Cou
ntry
ofor
igin
Age
rang
e(y
ear)
Res
pond
ent
No.
ofdo
mai
nsN
o.of
item
sD
imen
sion
sR
elia
bilit
y(a
)Va
lidity
(b)
Sens
itivi
tyto
chan
ge(c
)
38* I
CIS
[120
]U
K6–
17Pa
rent
430
Impa
ctof
epile
psy/
trea
tmen
t,im
pact
onch
ild’s
deve
lopm
ent/
adju
stm
ent,
impa
cton
pare
nts,
impa
cton
fam
ily
0+
0
39IC
ND
[121
]C
anad
a2–
18Pa
rent
444
Epile
psy,
cogn
ition
,beh
avio
r,ph
ysic
al/n
euro
logi
cfu
nctio
n++
+0
40*Q
OLI
E-89
[99]
USA
8–18
Self
525
Self-
conc
ept,
hom
elif
e,sc
hool
life,
soci
alac
tiviti
es,m
edic
ine
00
0
*41
QO
LIE-
AD
-48
[135
]U
SA11
–17
Self
848
Epile
psy
impa
ct,m
emor
y/co
ncen
trat
ion,
attit
udes
tow
ard
epile
psy,
phys
ical
func
tioni
ng,s
tigm
a,so
cial
supp
ort,
scho
olbe
havi
or,
heal
thpe
rcep
tions
++++
0
42Q
VC
E50
[145
]Br
azil
6–16
Pare
nt7
50Ph
ysic
al,p
sych
olog
ical
,soc
ial,
fam
iliar
,cog
nitiv
e,m
edic
al,e
cono
mic
al0
+0
Hem
ophi
lia43
Hem
o-Q
OL
[79,
80,8
4]IN
TER
NAT
ION
AL:
Fran
ce,G
erm
any,
Hol
land
,Ita
ly,Sp
ain,
Uni
ted
Kin
gdom
A:
4–7
B:8–
12C
:13–
16
4–16
Self
and
Pare
ntSe
lfan
dPa
rent
Self
and
Pare
nt
Self
and
Pare
nt
10 10 10 Sing
le
A:2
1B:
64C
:77
8†
Phys
ical
heal
th,f
eelin
g,at
titud
e,fa
mily
,fr
iend
s,ot
her
peop
le,s
port
and
scho
ol,c
opin
g,tr
eatm
ent,
futu
re,
rela
tions
hips
Tota
lsco
reon
ly
A:0
B:+
C:+ +
A:0
B:+
C:+ +
0 0 0 0
44C
HO
-Kla
t[1
00]
Can
ada
5–18
Self
and
Pare
nt8
79Tr
eatm
ent,
phys
ical
heal
th,f
amily
,fu
ture
,fee
lings
,und
erst
andi
ngof
hem
ophi
lia,o
ther
peop
lean
dot
her
frie
nds,
cont
rolo
ver
your
life
00
0
Hea
dach
e45
* QLH
-Y[1
36]
Nor
way
12–1
8Se
lfan
dPa
rent
471
Psyc
holo
gica
lfun
ctio
ning
,fun
ctio
nal
stat
us,p
hysi
cals
tatu
s,so
cial
func
tioni
ng
++
0
Hyd
roce
phal
us46
HO
Q[1
22]
Can
ada
5–17
Pare
nt3
51Ph
ysic
alhe
alth
,soc
ial-e
mot
iona
lhe
alth
,cog
nitiv
ehe
alth
+++
0
Infla
mm
ator
ybo
wel
dise
ase
47*C
hild
ren
with
Cro
hn’s
dise
ase
ques
tionn
aire
[101
]
UK
8–12
12–1
7Se
lf6
88D
isea
sean
dtr
eatm
ent,
soci
al,
emot
iona
l,fa
mily
,edu
catio
n,fu
ture
aspe
cts
00
0
48IM
PAC
T[1
02]
Can
ada
9–18
Self
633
Bow
el,b
ody
imag
e,fu
nctio
nal/s
ocia
lim
pair
men
t,em
otio
nali
mpa
irm
ent,
test
s/tr
eatm
ents
,sys
tem
icim
pair
men
t
+++
0
754 Solans et al.
Imm
une
thro
mbo
peni
cpu
rpur
a49
ITP
[137
]C
anad
a1–
17Se
lfan
dPa
rent
5(S
elf)
6 (par
ent)
26C
HIL
D:T
reat
men
tsi
deef
fect
,in
terv
entio
n,di
seas
e,ac
tivity
,fam
ilyPA
REN
T:C
once
rns
rela
ted
todi
agno
ses/
inve
stig
atio
n,tr
eatm
ent/
dise
ase
mon
itori
ng,c
hild
’sac
tiviti
es,
inte
rfer
ence
with
daily
life,
dise
ase
outc
ome,
emot
iona
lim
pact
s
00
0
50IT
P-Q
OL
[83 ]
Ger
man
y,Sw
eden
,Ita
lyIn
terv
iew
ed:
3–7
Self-
adm
inis
tere
d:8–
18
Self
and
Pare
nt8 12
22 81Tr
eatm
ent,
com
plai
nts
due
totr
eatm
ent,
blee
ding
s,fe
elin
gs,v
iew
,fa
mily
,fri
ends
,per
ceiv
edsu
ppor
t,ot
her
pers
ons,
spor
tan
dsc
hool
,de
alin
g,ho
spita
land
staf
f
00
0
Juve
nile
arth
ritis
51C
HA
Q[8
6 ]U
SA1–
19Se
lfan
dPa
rent
837
Dre
ssin
gan
dgr
oom
ing,
aris
ing,
eatin
g,w
alki
ng,h
ygie
ne,r
each
,gri
p,ac
tiviti
es++
++s
52*J
AQ
Q[8
7]C
anad
a2–
18Se
lfan
dPa
rent
474
Gro
ssm
otor
func
tion,
fine
mot
orfu
nctio
n,ps
ycho
soci
alfu
nctio
n,ge
nera
lsym
ptom
s
0+
0
Nas
olac
rim
aldu
ctob
stru
ctio
n53
NLD
O[1
23]
USA
4–6
Pare
ntSi
ngle
28To
tals
core
only
0+
0
Neu
rom
uscu
lar
diso
rder
s54
* LSI
A[1
03]
Can
ada
12–1
9Se
lf5
35G
ener
alw
ell-b
eing
,int
erpe
rson
alre
latio
nshi
ps,p
erso
nald
evel
opm
ent,
pers
onal
fulfi
llmen
t,le
isur
e/re
crea
tion
++
0
Obs
truc
tive
defe
catio
ndi
sord
er55
DD
L[1
04]
Ger
man
y7–
15Se
lf4
37C
onst
ipat
ion-
rela
ted,
emot
iona
lfu
nctio
ning
,soc
ialf
unct
ioni
ng,
trea
tmen
t/in
terv
entio
ns
++
0
Obs
truc
tive
slee
pap
nea
56O
SA-1
8[1
38]
USA
6m
onth
-12
Self
and
Pare
nt5
18Sl
eep
dist
urba
nce,
phys
ical
suffe
ring
,em
otio
nald
istr
ess,
dayt
ime
prob
lem
s,ca
regi
ver
conc
erns
++
+s
Ora
lhea
lth57
CH
ILD
-OID
P[1
06]
Tha
iland
11–1
2Se
lfSi
ngle
8To
tals
core
only
++
0
58C
PQ[1
43,1
44,1
60]
Can
ada
11–1
48–
10Se
lf4
36 25O
rals
ympt
oms,
func
tiona
llim
itatio
ns,
emot
iona
lwel
l-bei
ng,s
ocia
lwel
l-bei
ng++
+0
6–7
11–1
4Pa
rent
416
† 8†O
rals
ympt
oms,
func
tiona
llim
itatio
ns,
emot
iona
lwel
l-bei
ng,s
ocia
lwel
l-bei
ng+
+0
HRQOL Instruments for Children and Adolescents 755
Tabl
e2
cont
inue
d
Mea
sure
Cou
ntry
ofor
igin
Age
rang
e(y
ear)
Res
pond
ent
No.
ofdo
mai
nsN
o.of
item
sD
imen
sion
sR
elia
bilit
y(a
)Va
lidity
(b)
Sens
itivi
tyto
chan
ge(c
)
Pain
59PA
TC
[110
]H
olla
nd5–
15Se
lfSi
ngle
scal
e32
Tota
lsco
reon
ly+
+0
Shor
tst
atur
e60
*QO
Lin
Chi
ldre
nw
ithSh
ort
Stat
ure
[111
]
Isra
el8–
18Se
lf5
45A
cade
mic
achi
evem
ent
leve
l,le
isur
eac
tiviti
es,p
hysi
cals
elf-e
stee
m,
emot
iona
lsel
f-est
eem
,rel
atio
nshi
psw
ithpe
ers
and
fam
ilym
embe
rs
00
0
Spin
ede
form
ities
61Br
Q[1
12]
Gre
ece
9–18
Self
834
Gen
eral
heal
thpe
rcep
tion,
phys
ical
func
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62* Q
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[113
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ycho
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63* Q
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trum
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liabi
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sec)
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ithne
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or(+
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with
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ptab
lele
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.A
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lesc
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ualit
yof
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nnai
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ULE
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fact
ion
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xfo
rA
dole
scen
tsw
ithN
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mus
cula
rD
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ders
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A,A
bout
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Ast
hma;
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elat
edQ
ualit
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oms
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abili
tyQ
uest
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vior
al,A
ffect
ive
and
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atic
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rien
ces
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race
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nnai
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hild
hood
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hma
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nnai
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CA
VE,
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lade
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idad
deV
ida
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iño
con
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psia
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ldre
n’s
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mat
olog
yLi
feQ
ualit
yIn
dex;
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-P,C
hild
Epile
psy
Que
stio
nnai
re;C
FQ,C
ystic
Fibr
osis
Que
stio
nnai
re;C
HA
Q,C
hild
hood
Hea
lthA
sses
smen
tQ
uest
ionn
aire
;Chi
ld-O
IDP,
Chi
ld-O
ralI
mpa
cton
Dai
lyPe
rfor
man
ceIn
dex
;CH
O-k
lat,
Can
adia
nH
emop
hilia
Out
com
es—
Kid
sLi
feA
sses
smen
tToo
l;C
onQ
OL,
Qua
lity
ofLi
fefo
rC
hild
ren
with
Con
geni
talC
ardi
acD
isea
se;C
PQ
OL
Chi
ld,T
heC
hild
ren
with
Cer
ebra
lPal
syQ
ualit
yof
Life
Scal
e;C
PQ,C
hild
Perc
eptio
nsQ
uest
ionn
aire
;DD
L,D
efec
atio
nD
isor
der
List
;DIR
Q,D
iabe
tes-
spec
ific
Illne
ssR
epre
sent
atio
nsQ
uest
ionn
aire
;DIS
ABK
IDS,
Euro
pean
Qua
lity
ofLi
fefo
rC
hron
icH
ealth
Prob
lem
s;D
PSM
A,D
iabe
tes
Prob
lem
Solv
ing
Mea
sure
for
Ado
lesc
ents
;DQ
OL-
Y,D
iabe
tes
Qua
lity
ofLi
feM
easu
refo
rYou
th;E
CV
NO
,Esc
ala
deC
alid
adde
Vid
apa
raN
iños
Onc
ológ
icos
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EMO
-QO
L,H
emop
hilia
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lity
ofLi
feQ
uest
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Q,H
ydro
ceph
alus
Out
com
eQ
uest
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IS,I
mpa
ctof
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ldho
odIll
ness
Scal
es;I
CN
D,I
mpa
ctof
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ldho
odN
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erm
atiti
sQ
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pact
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uest
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P-Q
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path
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nic
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ura
Qua
lity
ofLi
feQ
uest
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,Juv
enile
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hriti
sQ
ualit
yof
Life
Que
stio
nnai
re;J
SCA
-QO
Lv3
,Qua
lity
ofLi
feQ
uest
ionn
aire
for
Japa
nese
Scho
ol-a
ged
Chi
ldre
nw
ithA
sthm
a;LA
QC
A,L
ifeA
ctiv
ities
Que
stio
nnai
refo
rC
hild
hood
Ast
hma;
LSIA
,Life
Satis
fact
ion
Inde
xfo
rA
dole
scen
tsw
ithN
euro
mus
cula
rD
isor
ders
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QO
L,M
inne
apol
is-M
anch
este
rQ
ualit
yof
Life
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OL,
The
Mia
miP
edia
tric
Qua
lity
ofLi
feQ
uest
ionn
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acri
mal
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bstr
uctio
nQ
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M-6
,Qua
lity
ofLi
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hild
ren
with
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isM
edia
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-18,
Obs
truc
tive
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pA
pnea
Synd
rom
e;PA
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edia
tric
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rgic
Dis
ease
Qua
lity
ofLi
feQ
uest
ionn
aire
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HO
M,P
edia
tric
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hma
Hea
lthO
utco
me
Mea
sure
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QLQ
,Ped
iatr
icA
sthm
aQ
ualit
yof
Life
Que
stio
nnai
re;P
ATC
,Pai
nA
sses
smen
tToo
lfor
Chi
ldre
n;PC
QL-
32,P
edia
tric
Can
cer
Qua
lity
ofLi
feIn
vent
ory;
PED
QO
L,Se
lf-ra
ting
QO
LQ
uest
ionn
aire
for
Chi
ldre
n;Pi
nQ,Q
ualit
yof
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Mea
sure
for
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ldre
nw
ithBl
adde
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ysfu
nctio
n;PO
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LS,P
edia
tric
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olog
yQ
ualit
yof
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e;PV
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OL,
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atri
cVo
ice-
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ated
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lity-
of-L
ifeSu
rvey
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-Y,Q
ualit
yof
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dach
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h;Q
LPSD
,Qua
lity
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ofile
for
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eD
efor
miti
es;Q
OLC
C,Q
ualit
yof
life
inC
hild
hood
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cer;
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lity
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psy
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e;Q
VC
E50,
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lidad
ede
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aR
elac
iona
daà
Saúd
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raC
rian
ças
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ileir
asco
mEp
ileps
ia;R
QLQ
,Rhi
noco
njun
ctiv
itis
Qua
lity
ofLi
feQ
uest
ionn
aire
;SN
-5,C
hild
ren
with
Pers
iste
ntSi
nona
salS
ympt
oms;
SQLI
,Sco
liosi
sQ
ualit
yof
Life
Inde
x,To
nsil
and
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nosi
lHS
Inst
rum
ent,
Tons
ilan
dA
deno
silH
ealth
Stat
usIn
stru
men
t.
756 Solans et al.
were exclusively parent/proxy reports, 14 were exclu-sively self-report instruments, and 14 used a combina-tion of the two.
Dimensions/items. The number of dimensions rangedfrom 2 [94,105] to 12 [83] and the number of itemsranged from 5 [114,127] to 178 [131]. Six instrumentsonly provided an overall score but no score bydimension [92,106,110,123,124,129,130]. The mostcommon concepts addressed in the instruments wereemotional well-being (n = 30), friends/social function-ing (n = 28), physical function (n = 23), symptoms,(n = 14) and treatment (n = 11).
Other characteristics. Illustrative figures were used intwo instruments [94,107].
Psychometric properties. In terms of reliability, datasolely on internal consistency were provided for 28%of the disease-specific instruments [73,73,77,78,85,89,90,92,97,103–105,112,116,118,131–134,140,141],4.7% provided data solely on test–retest reliability[90,109,124], and 45.3% provided data on both typesof reliability [79,80,82,86–88,91,93–96,99,102,106–108,113,114,118,121,122,125,126,128,129,135,136,138–140,142]. Results met accepted standards inalmost all cases. In two cases [98,127], reliability didnot meet accepted criteria, and this property wasnot assessed for 18.75% instruments [83,99–101,110,111,115,120,121,123,130,137,145].
The majority of the questionnaires reported onsome aspect of construct validity (71.9%). Only oneinstrument tested criterion validity, with acceptable
Table 3 Groups of domains included in generic health-related quality of life instruments for children
Content of domainsNumber ofinstruments Questionnaire acronym
Physical activity (Phy functioning, Phy abilities, Phy well-being,Phy belonging)
12 CHQ/ITQOL, CHRIs, COOP, DHPA, HAY, KIDSCREEN,KINDL, PedsQL 4.0, QOLP-AV, QOLQA,TNO-AZL/DUX-25,VSP-A
Bodily pain, symptoms, discomfort 10 16D/17D, CHIP-AE/CHIP-CE, CHQ/ITQOL, CHSCS-PS,CQOL, DHPA, HUI Mark 2/HUI Mark 3, HAY,TACQOL/TAPQOL,TQOLQA
Daily activities and senses 5 16D/17D, CHSCS-PS, CQOL, HUI Mark 2/HUI Mark 3,TAPQOL
(Mobility, ambulation, vision, sight, hearing, breathing, sleeping, eating, speech,elimination, dexterity, manipulation, self-care, continence, fertility)
Disorders, immunization status, disclosure of illness, 6 QUALIN, CHIP-AE, CHRIs, PIE,TAPQOL,WCHMPVitality, energy, satisfaction, liveliness 5 16D/17D, CHIP-AE/CHIP-CE, CHRIs,TAPQOL,VSP-ARestriction of activity (Limitations, Interference with activity,
motor functioning)3 CHQ, PIE,TACQOL
Growth and development 2 ITQOL, QOLP-AVResilience and/or Risks 2 CHIP-AE/CHIP-CE, COOPEmotional status (moods, emotions, temperament) 11 ITQOL, CHSCS-PS, COOP, HUI Mark 2, KIDSCREEN,
KINDL, PedsQL 4.0, QOLP-AV,TNO-AZL/DUX-25/TAPQOL, QOLQA,TQOLQA
Self-esteem, body image, autonomy 13 16D/17D, QUALIN, CHQ, CQOL, DHPA, KIDSCREEN,KINDL, QOLQA,TACQOL,TQOLQA,VSP-A,YQOL, NordicQOLQ for Children
Behavior, risk avoidance 5 QUALIN, CHIP-AE/CHIP-CE, CHQ/ITQOL,TAPQOL,WCHMP
Cognitive functioning (learning ability and memory, thinkingand problem solving, ability to concentrate)
6 17D, CHSCS-PS, HUI Mark 2/HUI Mark 3, HAY,TACQOL/TAPQOL,TQOLQA
Mental health 4 16D, CHQ/ITQOL, CHRIs, DHPANegative feelings (depression, anxiety, worry, distress) 4 16D/17D, CQOL, DHPA,TACQOL/TAPQOLPositive feelings (happiness) 2 HAY,TACQOL/TAPQOLParent preoccupation with illness 1 PIESchool and leisure, achievement 9 16D, CHIP-AE/CHIP-CE, COOP, CQOL, KIDSCREEN, KINDL,
PedsQL 4.0, QOLP-AV,VSP-AFamily (family communication, parent relation and home life,parental time impact, family cohesion)
9 AUQUEI, CHQ/ITQOL, COOP, CQOL, KIDSCREEN, KINDL,TNO-AZL/DUX-25,TQOLQA,VSP-A
Social functioning (social life, getting along with others, socialsupport, role function, communication, relationship)
11 AUQUEI, CHQ/ITQOL, CHRIs, COOP, CQOL, DHPA, HAY,KIDSCREEN, Nordic QOLQ for Children, PedsQL 4.0,QOLQA,TNO-AZL/DUX-25/TACQOL/TAPQOL,TQOLQA,YQOL
Friends 4 16D/17D, CQOL, KINDL,VSP-AEnvironment, social/community belonging, parental behavior,global sphere
6 QUALIN, Nordic QOLQ for Children, PIE, QOLP-AV,QOLQA,TQOLQA,YQOL
Bullying and peer rejection 2 KIDSCREEN, PIEMedical staff 1 VSP-AQOL, health-related quality of life 3 CHRIs,WCHMP,YQOLGeneral health perception, General health status 3 CHQ/ITQOL,DHPA,WCHMPHospital admission status 1 WCHMPFinancial resources/external sphere 2 KIDSCREEN, Nordic QOLQ for Children
HRQOL Instruments for Children and Adolescents 757
results [128]. Construct or criterion validity was notassessed in 21.9% instruments [83,85,96–99,101,109,111,115,117,130,135,137]. Structural validitywas assessed using confirmatory factor analysis in12.5% instruments, with satisfactory results[93–95,97,99,123,128,135,140] and sensitivity tochange was assessed in 17.2%, again with acceptableresults in all cases [73–75,86,89,112,117,124–128,138,140].
Conclusions
The results of this systematic review indicate that theproduction of HRQOL instruments for children andadolescents has continued to accelerate in recent years,particularly as regards disease-specific questionnaires.The latter have increased in number from the 22instruments identified by Eiser et al., Rajmil et al., andHarding et al. [10–12] in 2001 to the 64 question-naires which are currently available. There has alsobeen an increase in the number of generic instruments,although the increase has been less marked (from 21instruments in 2001 to 30 instruments in 2006).
The results of the present review suggest thatHRQOL measures for children and adolescents aregenerally multidimensional instruments designed tomeasure the respondent’s subjective point of viewregarding the impact of disease and treatment onphysical, psychological, and social functioning. In thatsense, the instruments identified reflect theoretical con-siderations regarding the HRQOL concept [9]. Thewide range in content and differences in the number ofdimensions and items are likely to reflect differences inthe development process, the theoretical frameworkapplied, the target population, and/or the instrument’sintended use.
The number of disease-specific instruments hasgrown exponentially in recent years, with the samenumber of instruments being produced in the last5 years as in the previous 20 years. Disease-specificinstruments now exist for 27 conditions. Althoughmany of the disease-specific instruments developedsince 2001 have relied substantially on child/adolescent self-report, the review also suggests thatthere is still a substantial reliance on parent/proxyreports. Fifteen of the new instruments developed since2001 were exclusively parent report instruments,despite the fact that studies have shown discrepanciesbetween child and parent ratings [11]. The majority ofthese new instruments were likewise not intended foruse in very young children or infants, where it may bejustifiable to only use parent/proxy ratings [117]. Scaledevelopers ought to consider producing child self-reports versions of new instruments, whenever it isfeasible to collect such reports. Children should also beinvolved at critical stages in the instrument develop-
ment process, through focus groups, individual inter-views, and in the phases of item reduction andvalidation.
Obtaining self-reports of HRQOL from youngerchildren (children aged below 8) was one of the chal-lenges mentioned by Eiser and Morse, and althoughthe need for a minimal level of cognitive capacity rep-resents a limitation, some instruments [58,59], withthe help of illustrations and interview administration,have reduced the minimum age for self-report to aslow as 5–6 years [59]. Different formats have also beentested in younger children, although there is no con-sensus yet about which is the most appropriate[105,116,121,127,128,131,146]. Techniques such asitem response theory [147,148], item banking, andcomputer adaptive testing might also provide promis-ing avenues of research by reducing the number ofitems needed to measure HRQOL while maintainingacceptable levels of precision and reliability [149].Another advantage of IRT is that it permits the iden-tification of items which function differently acrossgroups (e.g., groups defined by sex, age, or culture).Examples of age-appropriate computer-assisted instru-ments are the CAT-screen [150] and the AnimatedComputer Program [151], although their psychometricproperties have not been tested [152].
Another recent development has been the simulta-neous production of a small number of instruments indifferent countries [27,28,77–80,83,85], using experi-ence gained in the development of the World HealthOrganization Quality of Life (WHOQOL) measure[153]. This approach facilitates their use and compara-bility in international studies, as well as helping toensure content validity across different language ver-sions. At the same time, although it requires consider-able resources at the beginning of the process, it alsoavoids a number of the pitfalls and limitations involvedin the cultural adaptation of existing measures.
In terms of psychometric properties, the majority ofthe instruments included meet accepted standards ofinternal consistency and validity, although relativelyfew provide data on test–retest reliability, structuralvalidity, and sensitivity to change. The lack of evidenceon sensitivity to change is of particular concern forclinical trials, longitudinal studies or when monitoringpatients over time. Developers should aim to assessthis characteristic during instrument testing, forexample, by comparing scores on the instrumentbefore and after an intervention of known efficacy. Foruse at the population level, developers also need toconsider means of testing whether their instrumentsare suitable for exploring health inequalities betweendifferent population subgroups, such as those definedby socioeconomic status, sex, or immigrant status.Finally, for use in clinical practice [154,155] aspectssuch as brevity, ease of administration and scoring, andinterpretability need to be taken into account. It is also
758 Solans et al.
worth noting that we based the present review on“standard” conceptions of reliability and validity,whereas new theoretical models proposed in the litera-ture question existing methods for assessing reliabilityand validity, and set out new approaches for describingthe scales’ psychometric properties [156,157]. Thesecould be taken into account in future reviews.
As well as identifying some of the methodologicalshortcomings of existing instruments, the currentreview has also indicated areas where disease-specificHRQOL instruments are lacking. For example, thereare no such instruments for use in overweight andobese children, children with eating disorders, or withmental disorders such as depression. To date researchon the use of utility measures in pediatric populationshas been limited, although at least three preference-based instruments for children and adolescents havebeen developed [26,37,38,63,64,115]. Other research-ers have examined correlations between child-specificmeasures and the EQ-5D preference-based measure[158]. Nevertheless, a recent review highlighted someof the problems of HRQOL measurement for cost-utility studies in pediatric populations[159].
When selecting an HRQOL instrument, it is impor-tant to consider whether the questionnaire suits thepurpose of the investigation, if the dimensions coveredare relevant to the context, and the availability of thequestionnaire for the age group of interest. The type ofrespondent should be taken into account, and usersshould choose instruments with demonstrated reliabil-ity and validity, as well as ensuring that the instrumenthas demonstrated sensitivity to change if the aim isto evaluate the effectiveness of an intervention, ormonitor the evolution of health status over time. Inclinical practice, a useful strategy may be to incorpo-rate both generic and disease-specific questionnaires,or to use one of the existing questionnaires that inte-grate both generic and disease-specific modules. Itshould also be borne in mind that the date of develop-ment of measures will affect the amount of psycho-metric validation that has taken place and/or whichis available in the published literature.
Limitations of the present study include the fact thatinstruments published to 2001 were identified fromearlier reviews, which exposes the present study to anyweaknesses inherent in those studies, such as the use ofa limited number of databases for the search, andrestrictions on languages in which the searches wereperformed [10–12]. Nevertheless, the quality and cov-erage of the earlier reviews was considered to be highand by combining three reviews we aimed to minimizethe risk of inadvertently omitting relevant instruments.Inclusion criteria in the second phase of our reviewwere also not the same as those in the previousreviews. Despite using stricter inclusion criteria,however, we still identified a large number of newquestionnaires.
In conclusion, the production of HRQOL instru-ments for children and adolescents has continuedapace in recent years, particularly as regards disease-specific questionnaires. There is still substantial hetero-geneity among both generic and disease-specificinstruments in terms of content and length. Moreresearch is required into the test–retest reliability,structural validity, and sensitivity to change ofHRQOL instruments for children and adolescents.
Source of financial support: Instituto de Salud Carlos III(Network of excellence IRYSS G03/202).
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