12

Page 1

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: [email protected]; [email protected]

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

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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

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(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.

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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

Page 5

Tabl

e1

Des

crip

tion

ofth

ege

neri

che

alth

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ityof

life

inst

rum

ents

for

use

inpe

diat

ric

age

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sure

Cou

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igin

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rang

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ear)

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pond

ent

No.

ofdo

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o.of

item

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sion

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bilit

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)Va

lidity

(b)

Sens

itivi

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ge(c

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1* 1

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7]Fi

nlan

d12

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Self

1616

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ility

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ion,

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g,sp

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ion,

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pear

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disc

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depr

essi

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and

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lity

++

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* 17D

[38]

8–11

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ility

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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

Page 7

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.

Page 8

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

Page 9

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.

Page 10

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

Page 11

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.

Page 12

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

Page 13

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.

Page 14

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

Page 15

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

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756 Solans et al.

Page 16

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

Page 17

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.

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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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