Volume 11 Number 4 2008 VA L U E I N H E A LT H

Health-Related Quality of Life Measurement in Children and Adolescents: A Systematic Review of Generic and Disease-Specic 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
Agency for Quality, Research and Assessment in Health (AQuRAHealth), formerly Catalan Agency for Health Technology Assessment and Research, Barcelona, Spain; 2CIBER en Epidemiologa y Salud Pblica (CIBERESP), Barcelona, Spain; 3Institut Municipal dInvestigaci Mdica (IMIM-Hospital del Mar), Barcelona, Spain
1

A B S T R AC T

Objective: To identify currently available generic and disease-specic health-related quality of life (HRQOL) instruments for children and adolescents up to 19 years old, to describe their content, and to review their psychometric properties. Study Design: Previous reviews on the subject and a new literature review from 2001 to December 2006 (MEDLINE, the ISI Science Citation Index, HealthSTAR and PsycLit) were used to identify measures of HRQOL for children and adolescents. The characteristics (country of origin, age range, type of respondent, number of dimensions and items, name of the dimensions and condition) and psychometric properties (reliability, validity, and sensitivity to change) of the instruments were assessed following international guidelines published by the Scientic Committee of the Medical Outcomes Trust. Results: In total, 30 generic and 64 disease-specic instruments were identied, 51 of which were published between 2001 and 2005. Many generic measures cover a core set of basic concepts related to physical, mental and social health, although the number and name of dimensions varies

substantially. The lower age limit for self-reported instruments was 56 years old. Generic measures developed recently focused on both child self-report and parent-proxy report, although 26% of the disease-specic questionnaires were exclusively addressed to proxy-respondents. Most questionnaires had tested internal consistency (67%) and to a lesser extent testretest stability (44.7%). Most questionnaires reported construct validity, but few instruments analyzed criterion validity (n = 5), structural validity (n = 15) or sensitivity to change (n = 14). Conclusions: The development of HRQOL instruments for children and adolescents has continued apace in recent years, particularly with regard to disease-specic questionnaires. Many of the instruments meet accepted standards for psychometric properties, although instrument developers should include children from the beginning of the development process and need to pay particular attention to testing sensitivity to change. Keywords: adolescents, children, health-related quality of life, literature review, questionnaires.

Introduction
There is a growing interest in assessing health-related quality of life (HRQOL) in children and adolescents, not only within the research setting, but also in clinical practice [1]. As a consequence, a considerable number of instruments to measure HRQOL in children and adolescents have now been developed. HRQOL has been dened as referring to the physical, psychological, and social domains of health, seen as distinct areas that are inuenced by a persons experiences, beliefs, expectations, and perceptions [2]. It is therefore

Address correspondence to: Luis Rajmil, (AQuRAHealth), Roc Boronat, 81-95, 08005 Barcelona, Spain. E-mails: lrajmil@ aatrm.catsalut.net; lrajmil@imim.es 10.1111/j.1524-4733.2007.00293.x

usually considered to be a multidimensional construct and its evaluation generally relies on the patients subjective evaluation of well-being and/or functioning within the different domains comprising the overall construct. Measuring HRQOL is nowadays an important outcomes indicator in evaluating health-care interventions and treatments, in understanding the burden of disease, in identifying health inequalities, in allocating health resources, and in epidemiological studies and health surveys. In clinical practice, it has been suggested that HRQOL instruments can be useful in identifying and prioritizing health problems for individual patients, facilitating communication between patients and health-care staff, identifying hidden or unexpected health problems, as aids to decisionmaking, and in monitoring changes in patients health state or in detecting responses to treatment [3].
1098-3015/08/742 742764

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2007, International Society for Pharmacoeconomics and Outcomes Research (ISPOR)

HRQOL Instruments for Children and Adolescents

Instruments developed to measure HRQOL include both generic and disease-specic measures. The former are used to collect information on healthy as well as ill children, at the population level or in clinical practice, and allow for the comparison of HRQOL across different conditions and settings and between healthy and ill children. Disease-specic instruments, on the other hand, aim to collect information on symptoms or disease-specic health problems from more specic populations with a given disease or symptom (e.g., pain or aspects of treatment) [1]. Disease-specic instruments tend to be more sensitive to treatmentrelated changes [4]. A literature search identied several reviews of instruments to measure HRQOL in children and adolescents. The most wide-ranging of these reviews focused on the conceptual framework [57], the use of HRQOL instruments in clinical trials [8,9], and on identifying and evaluating all available published instruments [1012]. The most complete of these reviews [11] identied 18 generic instruments and 24 disease-specic measures. Rapid developments in the HRQOL eld, and the increasing number of measures available, underline the need for a new review. These reviews also highlighted some limitations of the then available instruments as well as important changes in the eld [7,1012]. These included: confusion regarding the denition of quality of life (QOL), heterogeneity in the number and content of dimensions [13]; limited availability of disease-specic instruments; discrepancies between child and parent ratings; limited availability of measures for self completion by children; the cultural appropriateness of measures for use in a different context from the original; the advantages and disadvantages of prole and index measures and the measurement of preference values (utilities) in pediatric populations. Advances in health care and health technology together with rapid developments in the eld of patient-reported outcomes (PRO) measurements, imply the need to update and rene these systematic reviews of HRQOL instruments and their psychometric characteristics to help researchers choose the best instrument for their needs. The aim of this study was to identify currently available generic and diseasespecic HRQOL instruments for children and adolescents up to 19 years old, to describe their content, and to assess their psychometric properties.

743
ments for children or adolescents developed or published between 1980 and 2000. To identify HRQOL instruments developed and/or published between 2001 and December 2006, we carried out an original search of databases using combinations of keywords such as child [MeSH] OR adolescent [MeSH] OR adolescent* OR child* OR teenage* [ti] OR kid* [ti] OR pediatr* OR pediatr* AND questionnaires [mh] 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. Databases searched included MEDLINE, the ISI Science Citation Index, HealthSTAR and PsycLit. We also hand-searched references from eligible articles, congress abstract books, and the gray literature, as well as contacting experts working in the eld and consulting virtual libraries of PRO instruments (ProQolid and Bibliopro) [14,15]. Searches were restricted to English, French and Spanish language documents.

Inclusion and Exclusion Criteria

Documents included for further analysis were those reporting the development, psychometric assessment and/or use of instruments measuring QOL, health status or well being and intended specically for children and adolescents up to the age of 19 years. Instruments could be completed by the children or adolescents themselves or proxies (parents, caregivers, or health workers), or both. Documents reporting on the use of instruments in pediatric samples were excluded from the analysis if the measures used were originally designed for use in adults or the general population. Articles or other documents reporting the use of functional scales and symptom checklists, the results of clinical applications or population studies using HRQOL instruments, and articles reporting on the cultural adaptation of instruments were also excluded from further analysis. Instruments were included if they were subjective measures intended to collect data on QOL, health status, well-being, and/or functioning.

Procedure
Documents identied by the systematic search were checked for relevance by three reviewers (M.D.E., V.S.S., M.S.) and data from documents considered eligible for inclusion was extracted using a standardized form. Any discrepancies regarding the relevance of the article for the review were resolved through consensus or in consultation with a fourth reviewer (L.R.). The following characteristics of instruments identied by the review were recorded: country of origin, age range, type of respondent (child/adolescent self-report, parent/proxy, both), number of dimensions and items, name of the dimensions, psychometric properties

Methods

Search Strategy
To identify all available instruments, two search strategies were used. First, we analyzed three previous reviews (those by Rajmil et al. [10], Eiser et al. [11], and Harding et al. [12]) to identify all HRQOL instru-

744
(reliability, validity, and sensitivity to change), and condition, in the case of disease-specic questionnaires.

Solans et al.
terion validity for a dimension measuring academic achievement might be tested by examining the relationship between scores on the dimension and the results provided in school reports. Validity is assessed by determining the degree to which hypothesized relations are observed in practice. Validity was classied as: (0) not reported; (-) validity is not acceptable in one or more aspects (structural, construct and/or criterion); (+) one type of validity tested, with acceptable results; (++) two types of validity tested with acceptable results; (+++) all three types of validity tested with acceptable results. Sensitivity to change refers to the ability of the questionnaire to detect clinically important changes in health status or HRQOL over time [16]. Although there are different statistics to assess sensitivity to change, such as the standardized response mean and measurement error, in the great majority of the articles reviewed the effect size was used. We therefore based our evaluation of a questionnaires sensitivity to change on this measure, and considered a minimum effect size of 0.2 as acceptable. Sensitivity to change was assessed as: (0) not reported; ( sec) assessed, but with negative results or (+s) assessed with acceptable results.

Analysis
Generic and disease-specic instruments are presented separately in the results. When determining the number of instruments, different versions of the same instrument (e.g., versions for different age groups, short versions, etc.) were counted as one. Dimensions in these instruments were analyzed to determine the extent to which content varied between generic instruments. For each instrument included in the review, the psychometric properties of reliability, validity, and sensitivity to change were evaluated in accordance with recommendations in the scientic literature on the desirable characteristics of HRQOL instruments [16,17]. Reliability refers to the extent to which the instrument is free from random error, and is usually assessed by measuring the scales internal consistency and test retest reliability [18]. Internal consistency refers to the fact that all items are homogeneous and measure the same construct, and testretest reliability refers to the reproducibility or stability over time of domain and overall scores when the conditions of measurement do not change. Minimal standards for reliability coefcients are usually set at 0.70 for use at group level and 0.900.95 for use at individual level [1820]. Reliability analysis was categorized as follows: (0) not reported; (-) reliability is not acceptable in terms of either internal consistency and/or testretest (<0.70 in 40% or more of the dimensions); (+) only one type of reliability (internal consistency or testretest) has been tested, with acceptable results; (++) both internal consistency and testretest stability are acceptable (>0.70 in 70% or more dimensions). Validity is the extent to which an instrument measures what it intends to measure [21]. Validity usually includes the measurement of structural validity, construct validity, and criterion validity. Structural validity refers to the extent to which the instruments structure, as determined by conrmatory factor analysis, reects a priori expectations of a theoretical-conceptual model based on clinical and biopsychosocial paradigms [16], and some authors consider it to be part of construct validity [22]. Construct validity measures the extent to which the questionnaire conrms a priori hypotheses, including its capacity to detect expected differences between groups of subjects (known groups validity) or associations with other instruments measuring constructs which are expected to be correlated (convergent validity) [16]. Criterion validity refers to the degree to which scores on the instrument being validated correlate with scores on an external marker, which can be accepted as a gold standard [16]. For example, cri-

Results
From previous literature reviews, we identied a total of 43 generic and disease-specic PRO instruments published before 2001, which met the study inclusion criteria. Two generic instruments were excluded because they were originally developed for use in adults (the Sickness Impact Prole and the Quality of Well-Being Scale) and one disease-specic instrument was excluded because it was considered to be a checklist (Play Performance Scale for Children). The search of publications between 2001 and 2006 revealed 1041 documents, which were potentially eligible for further analysis based on their titles and abstracts. Of these, 870 did not meet the inclusion criteria: 336 because they reported on clinical applications and population studies of pediatric questionnaires, 317 because they were not studies of HRQOL instruments, 111 because they referred to instruments designed for use in adult subjects, 100 because they referred to QOL studies but not to instrument development or validation (qualitative studies, comparisons between instruments, adaptations), and 6 because they were letters or editorials. A total of 171 documents were reviewed and 51 HRQOL instruments developed and/or published since 2001 were identied. Combining the results of the two phases of the review produced a total of 94 instruments addressed to pediatric populations. Of these, 30 were generic instruments and 64 were disease-specic. Several of the instruments (specically, 13 generic and 14 diseasespecic instruments) included versions for different age

HRQOL Instruments for Children and Adolescents

groups (toddler, child, adolescent) and/or short-form versions of the original instrument. Table 1 shows the characteristics of the generic instruments identied and Table 2 those of the diseasespecic instruments, together with results for the nine key attributes reviewed.

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reliability coefcients met accepted standards. In 13% of cases [30,40,41,55,71], reliability did not meet accepted standards, and two instruments did not provide data on either type of reliability [51,65,66]. The majority of the questionnaires reported acceptable construct validity (83.3%); one instrument did not fulll the previously established criteria for construct validity [55], and no data on this type of validity were provided for three instruments [39,46,47,49,72]. Criterion validity was assessed in only four instruments, with acceptable results in all cases [30,42, 43,50,5659]. Structural validity using factor analysis was examined in 23.3% instruments, with satisfactory results in terms of the t statistics used [31,42 45,52,5659,62,6770]. Only 10% of instruments reported data on sensitivity to change, all with acceptable results [27,28,53,62,67,68]. Disease-specic instruments. A total of 64 diseasespecic HRQOL instruments were identied; 65.6% were published since 2001. Of the questionnaires existing in 2001, a new version for a different age group was developed for one questionnaire [73], and there were new short versions for two questionnaires [7476]. Conditions included. Asthma (n = 10), cancer (n = 8), and epilepsy (n = 7) were the most frequent conditions identied in the list of 27 conditions covered by the disease-specic instruments. From 2001 on, new questionnaires were developed for a total of 18 conditions. Country of origin. Disease-specic instruments were predominantly developed in the United States (n = 22), UK (n = 10) and Canada (n = 10). Five of the instruments developed since 2001 were developed simultaneously in more than one country [7785]. Age range. Most of the instruments identied were developed for use in populations aged 5 years or over, although some could be used in populations less than 5 years (32.8%). Instruments targeting broader age ranges usually had different versions for different age groups (e.g., 512 and 1318), and some use a combination of self-reports for older respondents and proxy reports for younger subjects [8688]. Instruments developed since 2001 tended to include younger age groups, with ages as low as 1 and 2 years. Respondents. Of the disease-specic instruments identied, 43.7% relied exclusively on child self-reports [73,73,76,85,89115], 26.6% only on parent reports [105,112,116131] and 29.6% on both child and proxy reports [74,75,77,79,83,86,87,132145]. One instrument also included a nurse-reported version [132]. Of the instruments developed since 2001, 12

Generic Instruments
Of the 30 generic HRQOL instruments identied, nine were published between 2001 and 2006. In regard to the questionnaires existing in 2001, four new versions have been developed for different age groups [2326]. Country of origin. Generic instruments were predominantly developed in the United States (n = 10) and UK (n = 7). Only one instrument was developed simultaneously in more than one country [27,28], leading to a version for each country involved. Age range. The majority of instruments were developed for children aged 5 years or over. Only two generic instruments targeted early childhood (0 5 years) [29,30]. New versions published since 2001 focused particularly on early childhood [2325]. Respondent. Thirteen instruments use exclusively child or adolescent self-report [3149]; four use only proxy reports [29,30,50,51]; and 13 measures included both children/adolescent self-report and proxy responses [2325,27,28,5271]. One instrument also collected information from nurses [29]. Dimensions/items. The number of dimensions ranged between 3 [36] and 17 [38]. The number of items ranged from 6 [34,35] to 183 [56,57]. Seven questionnaires provide only an overall score and no score by dimension; the majority provide both an overall score and a score by dimension [3133,39,46,50,51,72]. Based on the names of the dimensions (Table 3), the most commonly measured concepts were self-esteem, body image and autonomy (n = 13), physical activity (n = 12), emotional status (n = 11), and school and leisure (n = 11). Other characteristics. Illustrative gures (smiley faces, cartoons, etc.) were included as visual aids in ve of the generic instruments [23,34,35,38,54,58,59,61]. Optional disease-specic modules were available for four generic instruments [31,53,61,67,68]. Psychometric properties. Among generic instruments, only 16.7% reported both internal consistency and testretest data [24,4246,5659,62]; 40% of the instruments only provided data on internal consistency [23,25,27,28,31,36,47,49,50,52,53,61,6770, 72]; and 20% only on testretest reliability [29,34,35,37,38,48,60,63,64]. In all of these cases, the

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Table 1
Age range (year) Respondent Self 16 16 + + No. of domains Dimensions No. of items Reliability (a) Validity (b) 1215

Description of the generic health-related quality of life instruments for use in pediatric age
Sensitivity to change (c) 0

Measure

Country of origin

*16D [37]

Finland

*17D [38] 811 Self 17 17

Mobility, vision, hearing, breathing, sleeping, eating, speech, elimination, school and hobbies, friends, physical appearance, mental function, discomfort and symptoms, depression, distress and vitality Mobility, vision, hearing, breathing, sleeping, eating, speech, elimination, school and hobbies, friends, physical appearance, discomfort and symptoms, depression, anxiety, vitality, ability to concentrate, learning ability and memory + 0 + ++ ++

2 412 3 month to 3 1117 611 Self and Parent 5 Self 6 183 Parent 4 34 Self 4 27

*AUQUEI [54]

France

+ + +++ +++

0 0 0 0

QUALIN [23]

Family life, social life, childrens activities (school and leisure), health Behavior, autonomy, environment, psychological (social) and somatic

*CHIP-AE [56,57]

USA

*CHIP-CE/CRF 45 (self) 76 (parent) 87 (self) 98, 50,

CHIP-CE/PRF [58,59]

Discomfort, disorders, satisfaction with health, achievement (of age-appropriate social roles), risks, resilience Satisfaction (with self and health), comfort (emotional and physical symptoms and limitations), resilience, risk avoidance, achievement (social roles) Physical functioning, bodily pain, role/ social-physical, general health perception, role/social-emotional/behavior, mental health, general behavior, self-esteem, parental emotional impact, parental time impact, family impact

4 1018 (self) 518 (parent) Self and Parent 11

*CHQ [62]

USA

++

+++

+s

28 (parent)
34 Parent 10 (and 3 single-item) 103

ITQOL [24]

Infant scales: physical abilities, growth and development, bodily pain/discomfort, temperament and moods, general behavior perceptions, getting along with others, general health perceptions, (change in health); Parent scales: Impact-emotional, impact-time, mental health, (general health, family cohesion) 7 20 Physical function, role function, mental health, QOL, energy, disease-specic hassles 10 41 Vision, hearing, speech, mobility, dexterity, self-care, emotion, learning and remembering, thinking and problem solving, pain and discomfort

++

5 512

*CHRIs [55]

USA

Self and Parent

6 25

CHSCS-PS [29]

Canada

Parent and nurse

Solans et al.

7 1221 Self 6 6 Physical, emotional, school work, social support, family communication, health habits Activities, appearance, communication, continence, depression, discomfort, eating, family, friends, mobility, school, sight, self-care, sleep, worry Total score only Physical, mental, social, general health, self-esteem, anxiety, depression, pain, disability, (perceived health, pain, disability) Total score only Total score only Total score only + + + +

CLQI [51] 516 Parent Single 12 Total score only 0

UK

+ +

0 0

*COOP [34,35]

USA

9 915 Self and Parent 15 15

*CQOL [60]

UK

10 912 1217 Self 10 (and 3 single-item) 17 Self Single scale 17

*CHRS [31]

USA

++ +

0 0

11

DHP-A [48]

USA

HRQOL Instruments for Children and Adolescents

12 611 016 616 Parent Self Parent Self Parent 12 49 8 45 7 7 Self Single scale 25 Parent Single scale 43/14 Self Single scale 16

*EHRQL [32,33]

UK

+ + 0 + +

+ ++ + + + +

0 0 0 0 0 0

13

*FSIIR [50]

USA

14

*GCQ [39,72]

UK

15

*HUI Mark 2 [63] 218 1218 218 1218 2.55

Canada

*HUI Mark 3 [64]

HSCS [26]

Canada and Australia

Sensation, mobility emotion, cognition, self-care, pain, fertility Vision, hearing, speech, ambulation, dexterity, emotion, cognition, pain Vision, hearing, speech, mobility, dexterity, self-care, emotion, learning and remembering, thinking and problem solving, pain, general health, behavior Physical functioning, cognitive functioning, social functioning, physical complaints, happiness

16 713 612 818 Self and Parent 10 5 Single scale Self 4 44 52 27 Self and Parent 5 80

*HAY [61]

Holland

+ + +

+ + +

0 0 +s

17

KIDSCREEN [27,28]

INTERNATIONAL: Austria, France, Germany, Greece, Holland, Hungary, Ireland, Poland, Spain, Sweden, Switzerland, The Czech Republic, UK

10

KIDSCREEN 52: Physical well-being, psychological well-being, moods and emotions, self-perception, autonomy, parent relation and home life, social support and peers, school environment, social acceptance (bullying), nancial resources KIDSCREEN 27: Physical well-being, psychological well-being, parent relations and autonomy, social support and peers, school environment

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Table 1
Age range (year) Respondent Self and Parent Self and Parent Self and Parent 4 74 Global sphere, external sphere, interpersonal sphere, personal sphere 0 4 12 + 6 24 + + 0 + No. of domains Dimensions No. of items Reliability (a) Validity (b) 816 47

continued
Sensitivity to change (c) +s 0 0

Measure Physical well-being, emotional well-being, self-esteem, family, friends, school Physical well-being, emotional well-being, self-esteem, family, friends, school

Country of origin

18

*KINDL [53]

Germany

19

*Nordic QOLQ 1218 (self) 218 (parent) Self and Parent 4 23 518 (self) 218 (parent) 825 Self 8 34 Physical functioning, emotional functioning, social functioning, school functioning Physical appearance, interference with activity, disclosure of illness, school/work, peer rejection, parental behavior, manipulation, preoccupation with illness, treatment Total score only Being (physical being, psychological being, spiritual being); belonging (physical belonging, social belonging, community belonging); becoming (practical becoming, leisure becoming, growth becoming) Physical, psychological, independence, social, environmental Physical, emotional, social, home 108

Sweden

for Children [65,66]

20

*PedsQL 4.0

USA

++

+s

Generic Core [67,68]

21

*PIE [40,41]

UK

22 611 1217 1420 Self 3 54 Self Single 15

PQ-LES-Q [46]

USA

++ +

0 +

0 0

23

*QOLP-AV [36]

Canada

24 1015 516 615 Self and Parent 7 Self 4 Self 5 70

QOLQA [49]

Japan

+ + +

0 ++ ++

0 0 0

25

*TNO-AZL/

Holland

36/25

DUX-25 [69] *TACQOL [52,70]

TAPQOL [25] 15 Parent

43

Self: Physical complaints, motor functioning, autonomy, cognitive function, social functioning, positive emotions, negative emotions Parent: Pain and symptoms, basic motor functioning, autonomy, cognitive function, social functioning, global positive emotional functioning, global negative emotional functioning Physical functioning: sleeping, appetite, lung problems, stomach problems, skin problems, motor functioning; social functioning: problem behavior, social functioning; cognitive functioning: communication; emotional functioning; positive mood, anxiety, liveliness

Solans et al.

26 1315 Self 7 38 Family, residential environment, personal competence, social relationships, physical appearance, psychological well-being, pain Psychological well-being, body image, physical well-being, vitality, friends, parents, teachers, school performance, medical staff

TedQL.4 [71] 38 Self and Parent 1 22 Total score only

UK

+ 0

0 0

27

TQOLQA [47]

Taiwan

28 1117 Self 9 Single scale 37 12

*VSP-A [42,43]

France

++

+++

HRQOL Instruments for Children and Adolescents

29 05 Parent 10 16

*WCHMP [30]

UK

++

30 1118 Self 4 Single scale 56 10

YQOL [45]

USA

General health status, acute minor illness status, behavioral status, accident status, acute signicant illness status, hospital admission status, immunization status, chronic illness status, functional health status, health-related quality of life Self, Relationship, Environment, General quality of life

++

++

*Instruments reviewed by earlier reviews. Short versions. (a) (0) not reported; (-) reliability is not acceptable in terms of one or both aspects (internal consistency and/or testretest <0.70 in 40% or more of the dimensions); (+) only one type of reliability (internal consistency or testretest) has been tested, with acceptable results; (++) reliability is acceptable in both aspects (internal consistency and testretest stability >0.70 in 70% or more dimensions). (b) (0) not reported; (-) validity is not acceptable in one or more aspects (structural, construct and/or criterion); (+) only one type of validity has been tested, with acceptable results; (++) two types of validity tested with acceptable results; (+++) all three types of validity tested with acceptable results. (c) (0) not reported; (sec) sensitivity to change has been assessed with negative results or (+s) sensitivity to change has been assessed with acceptable levels. 16D, 16-Dimensional Health-related Quality of Life Measure; 17D, 17-Dimensional Health-related Measure; AUQUEI, Autoquestionnaire Qualit de Vie-Enfant-Imag; CHIP-AE, Child Health and Illness ProleAdolescent Edition; CHIP-CE, Child Health and Illness ProleChild Edition; CHQ, Child Health Questionnaire; CHRIs, Child Health Rating Inventories; CHRS, Childrens Health Rating Scale; CHSCS-PS,The Comprehensive Health Status Classication System for Pre-school Children; CLQI, Childrens Life Quality Index; COOP, Dartmouth COOP Functional Health Assessment Charts; CQOL, Child Quality of Life Questionnaire; DHP-A, DUKE Health ProleAdolescent Version; EHRQL, Exeter Health-Related Quality of Life Measure; FSIIR, Functional Status II (R); GCQ, Generic Childrens Quality of Life Measure; HAY, How Are You? HSCS, Health Status Classication System; HUI Mark, Health Utilities Index Mark; ITQOL, Infant/Toddler Quality of Life Questionnaire; KIDSCREEN, Screening for Promotion of Health-Related Quality of Life in Children and Adolescents; KINDL, Fragebogen zur Lebensqualitt von Kindern & Judendlichen; PedsQL 4.0, Pediatric Quality of Life Inventory; PIE, Perceived Illness Experience Scale; PQ-LES-Q, Pediatric Quality of Life Enjoyment and Satisfaction Questionnaire; QOLP-AV, Quality of Life ProleAdolescent Version; QOLQA, Quality of Life Questionnaire for Adolescents; QUALIN, Infant Quality of Life;TACQOL,TNO-AZL Child Quality of Life;TAPQOL,TNO-AZL Preschool Children Quality of Life;TedQL, Quality of Life measure for children aged 38 years;TNO-AZL/DUX-25, Dutch Children TNO-AZL Quality of Life Questionnaire;TQOLQA,Taiwanese Quality of Life Questionnaire;VSP-A,Vec et Sante Perue de lAdolescent;WCHMP,Warwick Child Health and Morbidity Prole;YQOL,Youth Quality of Life Instrument.

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Table 2

Description of the disease-specic health-related quality of life instruments for use in pediatric age
Sensitivity to change (c) Validity (b) + +s

Measure 1217 Self 6 25 0

Country of origin Respondent Dimensions

Age range (year)

No. of domains

No. of items

Reliability (a)

Allergy 1 *AdolRQLQ [73]

USA

PRQLQ [89] 612 Self 5 23

Practical problems, nonhay fever symptoms, nose symptoms, eye symptoms, patient-specic activities, emotions Nose symptoms, eye symptoms, practical problems, other symptoms, activity limitations + Practical problems, symptoms, emotional problems Symptoms, medication, physical activities, emotion, social interaction, positive effects Total score only Restriction of social life, physical disturbances from signs and symptoms, limitations in physical activity, daily inconveniences in managing the disease, emotional distress Disability, nocturnal symptoms, daytime symptoms + ++

+s

2 616 Self 3 26

PADQLQ [90]

UK

+ +

Asthma 3 *AAQOL [91] 1217 Self 6 32

Australia

4 612 713 Self 5 35 Self Single scale 44

*AMA [92]

USA

+ ++

+ ++

0 0

ARQOL [93]

Taiwan

6 514 A: 47 B: 811 C: 1216 217 1018 Self 5 Parent 3 Self C: 5 C: 46 10 25 Self Self A: 2 B: 4 A: 14 B: 23 Parent 3 17

ASDQ [116]

UK

+ A: B: + QOL, distress Active QOL, passive QOL, distress, severity Active QOL, teenage QOL, distress, severity, reactivity Daytime symptoms, nighttime symptoms, functional limitations Asthma attack triggers, change in daily life, family support, satisfaction with life, restriction in participating in daily activities C: ++ 0 ++

0 A: + B: ++ C: + + +

0 A: 0 B: 0 C: 0 +s 0

*CAQs [94]

UK

IITG-CASF [117]

USA

JSCA-QOL v3 [95]

Japan

10 517 Self

LAQCA [96]

USA

71

Physical activities, work activities, outdoor activities, emotions and emotional behavior, home care, eating and drinking, miscellaneous 3 7 Symptoms, emotion, activity

++

Solans et al.

11 712

PAHOM [115]

USA

Self

12

*PAQLQ [74,75] 717 Self and Parent 3/2 Activity limitations, symptoms, emotional status Inuence on the child, inuence on the parent-family Social relations with peers, self-esteem, family and home, body image, independence, mental health, treatment + +

Canada

23/13 +

+s

Attention-decit/hyperactivity disorder USA 13 ADHD IMPACT MODULE [105] >15 Parent 2 18 617 Self 7 21

Bladder dysfunction 14 PinQ [85]

Hong Kong, Japan, Australia, USA, Italy, Turkey, Germany, Holland, Belgium Denmark 517 618 812 1320 Self 7 46 Self (interviewed) 4 32 Self 4 19 Self, Parent and nurses 5 38/14 Somatic distress, compliance, mood/behavior, interactions, activity Relational insulation, lack, emotional suffering, obstacles to mix desire

HRQOL Instruments for Children and Adolescents

Cancer 15 BASES [132]

USA

+ + ++

+ + + +

0 0 0 0

16

*ECVNO [97]

Spain

17

MMQOL-YF [81]

UK and USA

MMQOL-AF [82]

Outlook on life/family dinamics, physical symptoms, physical functioning, psychological functioning Physical functioning, psychological functioning, social functioning, cognitive functioning, body image, outlook on life, intimate relations Self-competence, emotional stability, social competence Psychological functioning, social functioning, cognitive functioning, physical functioning, disease/ treatment scales

18 118 818 Self and Parent 5 32 Parent 3 56

*MPQOL [118]

USA

+ +

+ +

0 0

19

PCQL-32 [133]

USA

20 818 Self 7

PEDQOL [98]

GERMANY

34

Physical functioning, autonomy, emotional functioning, cognition, friends, family, body image 21 Physical function and role restriction, emotional distress, reaction to current medical treatment

21 318 Parent 3

*POQOLS [119]

USA

22 718

QOLCC [134] Self and Parent

Taiwan

34

Physical function, psychological function, social function, treatment/ disease-related symptoms, cognitive function

751

752

Table 2

continued
Sensitivity to change (c) Validity (b) + 0

Measure 912 412 Parent 6 66 Self 4 52 Physical well-being, social well-being, emotional well-being, acceptance by others Physical well-being, social well-being, emotional well-being, access to services, acceptance by others, primary caregiver health ++

Country of origin Respondent Dimensions

Age range (year)

No. of domains

No. of items

Reliability (a)

Cerebral palsy 23 CP Qol Child [139]

UK

218 416 Self and Parent 6 6

Parent Medication, limitation, emotion, independence, social inclusion, social exclusion + + 0

Chronic conditions 24 DISABKIDS [77,78]

International Austria, France, Germany, Greece, Holland, Sweden

12 37

Congenital cardiac disease 25 ConQol [107] A: 811 B: 1216 Self A: 3 B: 4 A: 31 B: 39

UK

A: symptoms, ability to do activities, relationships with others B: symptoms, ability to do activities, relationships with others, control and coping

Cystic brosis 26 CFQ [140] 613 Self 8 33

France

813

Parent

11

43

1318

Self

33

++

++

+s

813

Parent

44

Physical symptoms, emotional functioning, social functioning, body image, eating disturbances, treatment burden, respiratory symptoms, digestive symptoms Physical symptoms, emotional functioning, vitality, school functioning, body image, eating disturbances, treatment burden, respiratory symptoms, digestive symptoms, weight, health perception Physical functioning, emotions, social limitations, energy/well-being, treatment burden, embarrassment, body image, role, eating disturbances Physical functioning, emotions, energy/ well-being, treatment burden, body image, role, eating disturbances 5 Identity, cause, consequences, timeline, control/cure

+s

Diabetes 27 DIRQ [141] 1118

UK

Self and Parent

Solans et al.

28

DPSMA [142] 1317 Self and Parent 5 17 Insulin adjustment, dietary management, glucose monitoring, recognizing and responding to glycemic deviation, psychosocial issues Satisfaction, impact, worries Impact, parents, worry, satisfaction + + + +

USA

++

HRQOL Instruments for Children and Adolescents

29 1118 1018 Self Self 3 4 46 35

*DQOL-Y [108] DQOL-Y Short form [76]

USA Luxemburg/ Belgium, Canada, Denmark, Finland, France, Germany, Holland, Ireland, Italy, Japan, Norway, Portugal, Macedonia, Spain, Sweden, Switzerland, England, Scotland 316 Self 6 10 Symptoms and feelings, leisure, school or holidays, personal relationships, sleep, treatment Total score only +

0 0

Dermatology 30 *CDLQI [109]

UK

31 Parent Single scale 6 6 11

IDQOL [124]

UK

<4

+s

Ear, nose and throat 32 *OM-6 [125,126] 6 month-12 Parent

USA

Physical suffering, hearing loss, speech impairment, emotional distress, activity limitations, caregiver concerns Sinus infection, nasal obstruction, allergy symptoms, emotional distress, activity limitations

+s

33 212 Parent 5

SN-5 [127]

USA

+s

34 216 Parent 6

Tonsil and Adenosil HS Instrument [128] 218 <14 Parent Parent 418 Parent Single Single scale 5

USA

15

Airway and breathing, infection, healthcare utilization, eating and swallowing, cost of care, behavior 10 8 178 Total score only Total score only Physical function, emotional well-being, cognitive function, social function, behavioral function

++

+++

+s

35

PVRQOL [129]

USA

++ 0 +

+ 0 +

0 0 0

Epilepsy 36 *CAVE [130]

Spain

37

CEQ-P [131]

Australia

753

754

Table 2

continued
Sensitivity to change (c) Validity (b) + 0

Measure 617 Parent 4 30 Impact of epilepsy/treatment, impact on childs development/adjustment, impact on parents, impact on family Epilepsy, cognition, behavior, physical/neurologic function Self-concept, home life, school life, social activities, medicine Epilepsy impact, memory/ concentration, attitudes toward epilepsy, physical functioning, stigma, social support, school behavior, health perceptions Physical, psychological, social, familiar, cognitive, medical, economical ++ 0 ++ 0

Country of origin Respondent Dimensions

Age range (year)

No. of domains

No. of items

Reliability (a)

38

*ICIS [120]

UK

39 218 818 1117 Self 8 48 Self 5 25 Parent 4 44

ICND [121]

Canada

+ 0 ++

0 0 0

40

*QOLIE-89 [99]

USA

*41

QOLIE-AD-48 [135]

USA

42 616 Parent 7 50

QVCE50 [145]

Brazil

Hemophilia 43 Hemo-QOL [79,80,84] A: 47 B: 812 C: 1316 416 518 Self and Parent 8 79 Self and Parent Single 8 Self and Parent Self and Parent Self and Parent 10 10 10 A: 21 B: 64 C: 77

INTERNATIONAL: France, Germany, Holland, Italy, Spain, United Kingdom

A: 0 B: + C: + + 0

A: 0 B: + C: + + 0

0 0 0 0 0

Physical health, feeling, attitude,family, friends, other people, sport and school, coping, treatment, future, relationships Total score only Treatment, physical health, family, future, feelings, understanding of hemophilia, other people and other friends, control over your life Psychological functioning, functional status, physical status, social functioning

44

CHO-Klat [100]

Canada

Headache 45 *QLH-Y [136] 1218 Self and Parent 4

Norway

71

Hydrocephalus 46 HOQ [122] 517 Parent 3

Canada

51

Physical health, social-emotional health, cognitive health 6 88 Disease and treatment, social, emotional, family, education, future aspects 6 33 Bowel, body image, functional/social impairment, emotional impairment, tests/treatments, systemic impairment

++

Inammatory bowel disease 47 *Children with 812 1217 Self

UK

Crohns disease questionnaire [101]

918 Self

48

IMPACT [102]

Canada

++

Solans et al.

Immune thrombopenic purpura 49 ITP [137] 117 Self and Parent 5 (Self) 6 (parent) 26 CHILD: Treatment side effect, intervention, disease, activity, family PARENT: Concerns related to diagnoses/investigation, treatment/ disease monitoring, childs activities, interference with daily life, disease outcome, emotional impacts Treatment, complaints due to treatment, bleedings, feelings, view, family, friends, perceived support, other persons, sport and school, dealing, hospital and staff Dressing and grooming, arising, eating, walking, hygiene, reach, grip, activities Gross motor function, ne motor function, psychosocial function, general symptoms Total score only General well-being, interpersonal relationships, personal development, personal fulllment, leisure/recreation Constipation-related, emotional functioning, social functioning, treatment/interventions 18 Sleep disturbance, physical suffering, emotional distress, daytime problems, caregiver concerns 8 4 4 Total score only 0 0

Canada

50 Interviewed: 37 Selfadministered: 818 119 218 Self and Parent 4 74 Self and Parent 8 37 Self and Parent 8 12 22 81

ITP-QOL [83]

Germany, Sweden, Italy

HRQOL Instruments for Children and Adolescents

Juvenile arthritis 51 CHAQ [86]

USA

++ 0

+ +

+s 0

52

*JAQQ [87]

Canada

Nasolacrimal duct obstruction 53 NLDO [123] 46 1219 Self 5 35 Parent Single 28

USA

0 +

+ +

0 0

Neuromuscular disorders 54 *LSIA [103]

Canada

Obstructive defecation disorder 55 DDL [104] 715 Self 4 37

Germany

Obstructive sleep apnea 56 OSA-18 [138] 6 month-12 Self and Parent 5

USA

+s

Oral health 57 CHILD-OIDP [106] 1112 Self Parent Self

Thailand

Single

+ ++ 36 25 16

+ +

0 0 + + 0 Oral symptoms, functional limitations, emotional well-being, social well-being Oral symptoms, functional limitations, emotional well-being, social well-being

58 1114 810 67 1114

CPQ [143,144,160]

Canada

755

756

Table 2

continued
Sensitivity to change (c) + 0

Measure 515 Self Single scale 5 45 0 Academic achievement level, leisure activities, physical self-esteem, emotional self-esteem, relationships with peers and family members General health perception, physical functioning, emotional functioning, self-esteem and aesthetics, vitality, school activity, bodily pain, social functioning Psychological functioning, sleep disturbances, body image, back exibility, back pain Social, emotional, intellectual, nancial, medical, independence, environmental, physical, recreational, vocational Physical activity performance, back pain, self-esteem, moods and feelings and satisfaction with management 32 Total score only +

Country of origin Respondent Dimensions

Age range (year)

No. of domains

No. of items

Reliability (a)

Validity (b)

Pain 59

PATC [110]

Holland

Short stature 60 *QOL in Children 818 Self

Israel

with Short Stature [111]

918 Self 8 34

Spine deformities 61 BrQ [112]

Greece

62 1020 Self 5 21

*QLPSD [113]

Spain

++

63 520 Self and Parent 10 44/47

*QOL in Spina

Canada

++

Bida Q [88]

64 1018 Self 5 5

SQLI [114]

USA

++

*Instruments covered by earlier reviews. Short versions

(a) (0) not reported; (-) reliability is not acceptable in terms of internal consistency and/or testretest (<0.70 in 40% or more of dimensions); (+) only one type of reliability (internal consistency or testretest) has been tested, with acceptable results; (++) reliability is acceptable for both internal consistency and testretest stability (>0.70 in 70% or more dimensions). (b) (0) not reported; (-) validity is not acceptable in one or more aspects (structural, construct and/or criterion); (+) only one type of validity has been tested, with acceptable results; (++) two types of validity tested with acceptable results; (+++) all three types of validity tested with acceptable results. (c) (0) not reported; (- sec) sensitivity to change has been assessed with negative results or (+s) sensitivity to change has been assessed with acceptable levels. AAQOL, Adolescent Asthma Quality of Life Questionnaire; ADHD IMPACT MODULE, Life Satisfaction Index for Adolescents with Neuromuscular Disorders; AMA, About My Asthma; ARQOL, Asthma-Related Quality of Life; ASDQ, Asthma Symptoms and Disability Questionnaire; BASES, Behavioral, Affective and Somatic Experiences Scale; BrQ, Brace Questionnaire; CAQs, Childhood Asthma Questionnaires; CAVE, Escala de Calidad de Vida del Nio con Epilepsia; CDLQI, Childrens Dermatology Life Quality Index; CEQ-P, Child Epilepsy Questionnaire; CFQ, Cystic Fibrosis Questionnaire; CHAQ, Childhood Health Assessment Questionnaire; Child-OIDP, Child-Oral Impact on Daily Performance Index ; CHO-klat, Canadian Hemophilia OutcomesKids Life Assessment Tool; ConQOL, Quality of Life for Children with Congenital Cardiac Disease; CP QOL Child,The Children with Cerebral Palsy Quality of Life Scale; CPQ, Child Perceptions Questionnaire; DDL, Defecation Disorder List; DIRQ, Diabetes-specic Illness Representations Questionnaire; DISABKIDS, European Quality of Life for Chronic Health Problems; DPSMA, Diabetes Problem Solving Measure for Adolescents; DQOL-Y, Diabetes Quality of Life Measure for Youth; ECVNO, Escala de Calidad de Vida para Nios Oncolgicos; HAEMO-QOL, Hemophilia Quality of Life Questionnaire; HOQ, Hydrocephalus Outcome Questionnaire; ICIS, Impact of Childhood Illness Scales; ICND, Impact of Childhood Neurologic Disability Scale; IDQOL, Infants Dermatitis QOL Index; IMPACT, Impact Questionnaire; ITG-CASF, Integrated Therapeutics Group Child Asthma Short Form; ITP, Immune Thrombopenic Purpura Child Quality of life Questionnaire; ITP-QOL, Idiopathic Thrombocytopenic Purpura Quality of Life Questionnaire; JAQQ, Juvenile Arthritis Quality of Life Questionnaire; JSCA-QOL v3, Quality of Life Questionnaire for Japanese School-aged Children with Asthma; LAQCA, Life Activities Questionnaire for Childhood Asthma; LSIA, Life Satisfaction Index for Adolescents with Neuromuscular Disorders; MMQOL, Minneapolis-Manchester Quality of Life; MPQOL,The Miami Pediatric Quality of Life Questionnaire; NLDO,The Nasolacrimal Duct Obstruction Questionnaire Score; OM-6, Quality of Life for Children with Otitis Media; OSA-18, Obstructive Sleep Apnea Syndrome; PADQLQ, Pediatric Allergic Disease Quality of Life Questionnaire; PAHOM, Pediatric Asthma Health Outcome Measure; PAQLQ, Pediatric Asthma Quality of Life Questionnaire; PATC, Pain Assessment Tool for Children; PCQL-32, Pediatric Cancer Quality of Life Inventory; PEDQOL, Self-rating QOL Questionnaire for Children; PinQ, Quality of Life Measure for Children with Bladder Dysfunction; POQOLS, Pediatric Oncology Quality of Life Scale; PVRQOL, Pediatric Voice-Related Quality-of-Life Survey; QLH-Y, Quality of Life Headache in Youth; QLPSD, Quality of Life Prole for Spine Deformities; QOLCC, Quality of life in Childhood Cancer; QOLIE, Quality of Life in Epilepsy Scale; QVCE50, Qualidade de Vida Relacionada Sade para Crianas Brasileiras com Epilepsia; RQLQ, Rhinoconjunctivitis Quality of Life Questionnaire; SN-5, Children with Persistent Sinonasal Symptoms; SQLI, Scoliosis Quality of Life Index, Tonsil and Adenosil HS Instrument, Tonsil and Adenosil Health Status Instrument.

Solans et al.

HRQOL Instruments for Children and Adolescents

Table 3 Groups of domains included in generic health-related quality of life instruments for children
Number of instruments 12 10 5 Questionnaire acronym CHQ/ITQOL, CHRIs, COOP, DHPA, HAY, KIDSCREEN, KINDL, PedsQL 4.0, QOLP-AV, QOLQA, TNO-AZL/ DUX-25,VSP-A 16D/17D, CHIP-AE/CHIP-CE, CHQ/ITQOL, CHSCS-PS, CQOL, DHPA, HUI Mark 2/HUI Mark 3, HAY, TACQOL/ TAPQOL, TQOLQA 16D/17D, CHSCS-PS, CQOL, HUI Mark 2/HUI Mark 3, TAPQOL

757

Content of domains Physical activity (Phy functioning, Phy abilities, Phy well-being, Phy belonging) Bodily pain, symptoms, discomfort Daily activities and senses

(Mobility, ambulation, vision, sight, hearing, breathing, sleeping, eating, speech, elimination, dexterity, manipulation, self-care, continence, fertility) Disorders, immunization status, disclosure of illness, 6 Vitality, energy, satisfaction, liveliness 5 Restriction of activity (Limitations, Interference with activity, 3 motor functioning) Growth and development 2 Resilience and/or Risks 2 Emotional status (moods, emotions, temperament) 11 Self-esteem, body image, autonomy Behavior, risk avoidance Cognitive functioning (learning ability and memory, thinking and problem solving, ability to concentrate) Mental health Negative feelings (depression, anxiety, worry, distress) Positive feelings (happiness) Parent preoccupation with illness School and leisure, achievement Family (family communication, parent relation and home life, parental time impact, family cohesion) Social functioning (social life, getting along with others, social support, role function, communication, relationship) Friends Environment, social/community belonging, parental behavior, global sphere Bullying and peer rejection Medical staff QOL, health-related quality of life General health perception, General health status Hospital admission status Financial resources/external sphere 13 5 6 4 4 2 1 9 9 11

QUALIN, CHIP-AE, CHRIs, PIE, TAPQOL, WCHMP 16D/17D, CHIP-AE/CHIP-CE, CHRIs, TAPQOL,VSP-A CHQ, PIE, TACQOL ITQOL, QOLP-AV CHIP-AE/CHIP-CE, COOP ITQOL, CHSCS-PS, COOP, HUI Mark 2, KIDSCREEN, KINDL, PedsQL 4.0, QOLP-AV, TNO-AZL/DUX-25/ TAPQOL, QOLQA, TQOLQA 16D/17D, QUALIN, CHQ, CQOL, DHPA, KIDSCREEN, KINDL, QOLQA, TACQOL, TQOLQA,VSP-A,YQOL, Nordic QOLQ for Children QUALIN, CHIP-AE/CHIP-CE, CHQ/ITQOL, TAPQOL, WCHMP 17D, CHSCS-PS, HUI Mark 2/HUI Mark 3, HAY, TACQOL/TAPQOL, TQOLQA 16D, CHQ/ITQOL, CHRIs, DHPA 16D/17D, CQOL, DHPA, TACQOL/TAPQOL HAY, TACQOL/TAPQOL PIE 16D, CHIP-AE/CHIP-CE, COOP, CQOL, KIDSCREEN, KINDL, PedsQL 4.0, QOLP-AV,VSP-A AUQUEI, CHQ/ITQOL, COOP, CQOL, KIDSCREEN, KINDL, TNO-AZL/DUX-25, TQOLQA,VSP-A 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 16D/17D, CQOL, KINDL,VSP-A QUALIN, Nordic QOLQ for Children, PIE, QOLP-AV, QOLQA, TQOLQA,YQOL KIDSCREEN, PIE VSP-A CHRIs, WCHMP,YQOL CHQ/ITQOL,DHPA, WCHMP WCHMP KIDSCREEN, Nordic QOLQ for Children

4 6 2 1 3 3 1 2

were exclusively parent/proxy reports, 14 were exclusively self-report instruments, and 14 used a combination of the two. Dimensions/items. The number of dimensions ranged from 2 [94,105] to 12 [83] and the number of items ranged from 5 [114,127] to 178 [131]. Six instruments only provided an overall score but no score by dimension [92,106,110,123,124,129,130]. The most common concepts addressed in the instruments were emotional well-being (n = 30), friends/social functioning (n = 28), physical function (n = 23), symptoms, (n = 14) and treatment (n = 11). Other characteristics. Illustrative gures were used in two instruments [94,107].

Psychometric properties. In terms of reliability, data solely on internal consistency were provided for 28% of the disease-specic instruments [73,73,77,78,85,89, 90, 92, 97, 103 105, 112, 116, 118,131134,140,141], 4.7% provided data solely on testretest reliability [90,109,124], and 45.3% provided data on both types of reliability [79,80,82,8688,91,9396,99,102,106 108,113,114,118,121,122,125,126,128,129,135,136, 138140,142]. Results met accepted standards in almost all cases. In two cases [98,127], reliability did not meet accepted criteria, and this property was not assessed for 18.75% instruments [83,99101, 110,111,115,120,121,123,130,137,145]. The majority of the questionnaires reported on some aspect of construct validity (71.9%). Only one instrument tested criterion validity, with acceptable

758
results [128]. Construct or criterion validity was not assessed in 21.9% instruments [83,85,9699,101, 109,111,115,117,130,135,137]. Structural validity was assessed using conrmatory factor analysis in 12.5% instruments, with satisfactory results [9395,97,99,123,128,135,140] and sensitivity to change was assessed in 17.2%, again with acceptable results in all cases [7375,86,89,112,117,124128, 138,140].

Solans et al.
ment process, through focus groups, individual interviews, and in the phases of item reduction and validation. Obtaining self-reports of HRQOL from younger children (children aged below 8) was one of the challenges mentioned by Eiser and Morse, and although the need for a minimal level of cognitive capacity represents a limitation, some instruments [58,59], with the help of illustrations and interview administration, have reduced the minimum age for self-report to as low as 56 years [59]. Different formats have also been tested in younger children, although there is no consensus yet about which is the most appropriate [105,116,121,127,128,131,146]. Techniques such as item response theory [147,148], item banking, and computer adaptive testing might also provide promising avenues of research by reducing the number of items needed to measure HRQOL while maintaining acceptable levels of precision and reliability [149]. Another advantage of IRT is that it permits the identication of items which function differently across groups (e.g., groups dened by sex, age, or culture). Examples of age-appropriate computer-assisted instruments are the CAT-screen [150] and the Animated Computer Program [151], although their psychometric properties have not been tested [152]. Another recent development has been the simultaneous production of a small number of instruments in different countries [27,28,7780,83,85], using experience gained in the development of the World Health Organization Quality of Life (WHOQOL) measure [153]. This approach facilitates their use and comparability in international studies, as well as helping to ensure content validity across different language versions. At the same time, although it requires considerable resources at the beginning of the process, it also avoids a number of the pitfalls and limitations involved in the cultural adaptation of existing measures. In terms of psychometric properties, the majority of the instruments included meet accepted standards of internal consistency and validity, although relatively few provide data on testretest reliability, structural validity, and sensitivity to change. The lack of evidence on sensitivity to change is of particular concern for clinical trials, longitudinal studies or when monitoring patients over time. Developers should aim to assess this characteristic during instrument testing, for example, by comparing scores on the instrument before and after an intervention of known efcacy. For use at the population level, developers also need to consider means of testing whether their instruments are suitable for exploring health inequalities between different population subgroups, such as those dened by socioeconomic status, sex, or immigrant status. Finally, for use in clinical practice [154,155] aspects such as brevity, ease of administration and scoring, and interpretability need to be taken into account. It is also

Conclusions
The results of this systematic review indicate that the production of HRQOL instruments for children and adolescents has continued to accelerate in recent years, particularly as regards disease-specic questionnaires. The latter have increased in number from the 22 instruments identied by Eiser et al., Rajmil et al., and Harding et al. [1012] in 2001 to the 64 questionnaires which are currently available. There has also been an increase in the number of generic instruments, although the increase has been less marked (from 21 instruments in 2001 to 30 instruments in 2006). The results of the present review suggest that HRQOL measures for children and adolescents are generally multidimensional instruments designed to measure the respondents subjective point of view regarding the impact of disease and treatment on physical, psychological, and social functioning. In that sense, the instruments identied reect theoretical considerations regarding the HRQOL concept [9]. The wide range in content and differences in the number of dimensions and items are likely to reect differences in the development process, the theoretical framework applied, the target population, and/or the instruments intended use. The number of disease-specic instruments has grown exponentially in recent years, with the same number of instruments being produced in the last 5 years as in the previous 20 years. Disease-specic instruments now exist for 27 conditions. Although many of the disease-specic instruments developed since 2001 have relied substantially on child/ adolescent self-report, the review also suggests that there is still a substantial reliance on parent/proxy reports. Fifteen of the new instruments developed since 2001 were exclusively parent report instruments, despite the fact that studies have shown discrepancies between child and parent ratings [11]. The majority of these new instruments were likewise not intended for use in very young children or infants, where it may be justiable to only use parent/proxy ratings [117]. Scale developers ought to consider producing child selfreports versions of new instruments, whenever it is feasible to collect such reports. Children should also be involved at critical stages in the instrument develop-

HRQOL Instruments for Children and Adolescents

worth noting that we based the present review on standard conceptions of reliability and validity, whereas new theoretical models proposed in the literature question existing methods for assessing reliability and validity, and set out new approaches for describing the scales psychometric properties [156,157]. These could be taken into account in future reviews. As well as identifying some of the methodological shortcomings of existing instruments, the current review has also indicated areas where disease-specic HRQOL instruments are lacking. For example, there are no such instruments for use in overweight and obese children, children with eating disorders, or with mental disorders such as depression. To date research on the use of utility measures in pediatric populations has been limited, although at least three preferencebased instruments for children and adolescents have been developed [26,37,38,63,64,115]. Other researchers have examined correlations between child-specic measures and the EQ-5D preference-based measure [158]. Nevertheless, a recent review highlighted some of the problems of HRQOL measurement for costutility studies in pediatric populations[159]. When selecting an HRQOL instrument, it is important to consider whether the questionnaire suits the purpose of the investigation, if the dimensions covered are relevant to the context, and the availability of the questionnaire for the age group of interest. The type of respondent should be taken into account, and users should choose instruments with demonstrated reliability and validity, as well as ensuring that the instrument has demonstrated sensitivity to change if the aim is to evaluate the effectiveness of an intervention, or monitor the evolution of health status over time. In clinical practice, a useful strategy may be to incorporate both generic and disease-specic questionnaires, or to use one of the existing questionnaires that integrate both generic and disease-specic modules. It should also be borne in mind that the date of development of measures will affect the amount of psychometric validation that has taken place and/or which is available in the published literature. Limitations of the present study include the fact that instruments published to 2001 were identied from earlier reviews, which exposes the present study to any weaknesses inherent in those studies, such as the use of a limited number of databases for the search, and restrictions on languages in which the searches were performed [1012]. Nevertheless, the quality and coverage of the earlier reviews was considered to be high and by combining three reviews we aimed to minimize the risk of inadvertently omitting relevant instruments. Inclusion criteria in the second phase of our review were also not the same as those in the previous reviews. Despite using stricter inclusion criteria, however, we still identied a large number of new questionnaires.

759
In conclusion, the production of HRQOL instruments for children and adolescents has continued apace in recent years, particularly as regards diseasespecic questionnaires. There is still substantial heterogeneity among both generic and disease-specic instruments in terms of content and length. More research is required into the testretest reliability, structural validity, and sensitivity to change of HRQOL instruments for children and adolescents.
Source of nancial support: Instituto de Salud Carlos III (Network of excellence IRYSS G03/202).

References
1 Fayers PM, Machin D. Quality of Life. Assessment, Analysis and Interpretation. West Sussex, UK: John Wiley & Sons Ltd, 2000. 2 Testa MA, Simonson DC. Assessment of quality-oflife outcomes. N Engl J Med 1996;334:83540. 3 Higginson IJ, Carr AJ. Measuring quality of life: using quality of life measures in the clinical setting. BMJ 2001;322:1297300. 4 Wiebe S, Guyatt G, Weaver B, et al. Comparative responsiveness of generic and specic quality-of-life instruments. J Clin Epidemiol 2003;56:5260. 5 Davis E, Waters E, Mackinnon A, et al. Paediatric quality of life instruments: a review of the impact of the conceptual framework on outcomes. Dev Med Child Neurol 2006;48:31118. 6 De Civita M, Regier D, Alamgir AH, et al. Evaluating health-related quality-of-life studies in paediatric populations: some conceptual, methodological and developmental considerations and recent applications. Pharmacoeconomics 2005;23:65985. 7 Ravens-Sieberer U, Erhart M, Wille N, et al. Generic health-related quality-of-life assessment in children and adolescents: methodological considerations. Pharmacoeconomics 2006;24:1199220. 8 Clarke SA, Eiser C. The measurement of healthrelated quality of life (QOL) in pediatric clinical trials: a systematic review. Health Qual Life Outcomes 2004;2:66. 9 Matza LS, Swensen AR, Flood EM, et al. Assessment of health-related quality of life in children: a review of conceptual, methodological, and regulatory issues. Value Health 2004;7:7992. 10 Rajmil L, Estrada MD, Herdman M, et al. Health related quality of life (HRQOL) in childhood and adolescence: a review of the literature and instruments adapted in Spain. [Calidad de vida relacionada con la salud (CVRS) en la infancia y la adolescencia: revisin de la bibliografa y de los instrumentos adaptados en Espaa]. Gac Sanit 2001;15(Suppl. 4):S3443 (in Spanish). 11 Eiser C, Morse R. A review of measures of quality of life for children with chronic illness. Arch Dis Child 2001;84:20511. 12 Harding L. Childrens quality of life assessments: a review of generic and health related quality of life measures completed by children and adolescents. Clin Psychol Psychother 2001;8:7996.

760
13 Bullinger M. Quality of life-denition, conceptualization and implications: a methodologists view. Theor Surg 1991;6:1438. 14 PROQOLID, Patient Reported Outcome and Quality Of Life Instruments [database on the Internet]. Lyon: Mapi Research Institute, 2005. Available from: http://www.proqolid.org/ [Accessed May 29, 2005]. 15 BiblioPRO [database on the internet]. Barcelona: Unidad de Investigacin en Servicios Sanitarios del Instituto de Investigacin Mdica (IMIM). Red IRYSS (Red de investigacin cooperativa para la Investigacin en Resultados de Salud y Servicios Sanitarios). Available from: http://iryss.imim.es/ iryss/BiblioPRO.asp [Accessed April 25, 2006]. 16 Scientic Advisory Committee of the Medical Outcomes Trust. Assessing health status and quality-oflife instruments: attributes and review criteria. Qual Life Res 2002;11:193205. 17 Terwee CB, Dekker FW, Wiersinga WM, et al. On assessing responsiveness of health-related quality of life instruments: guidelines for instrument evaluation. Qual Life Res 2003;12:34962. 18 Hays RD, Anderson R, Revicki D. Psychometric considerations in evaluating health-related quality of life measures. Qual Life Res 1993;2:4419. 19 Nunnally JC, Bernstein IH. Psychomertric Theory (3rd ed.) New York: McGraw-Hill I, 1994. 20 Pedhauzur EJ, Schmelkin LP, eds. Measurement, Design and Analysis: An Integrated Approach. Hillsdale, NJ: Lawrence Eribaum Associates, Inc, 1991. 21 Alonso J, Ant JM. Instrumentos de medida de calidad de vida relacionada con la salud: caractersticas generales y proceso de adaptacin transcultural. Quaderns CAPS 1990;14:1624 (in Spanish). 22 Muniz-Diaz E, Madoz P, de la Calle MO, Puig L. The polymorphonuclear neutrophil Fc gamma RIIIb deciency is more frequent than hitherto assumed [carta]. Blood 1995;86:3999. 23 Manicat S, Dazord A, Langue J, et al. Qualite de vie du nourrisson: criteres des parents et des professionnels. Elaboration dun instrument devaluation. Arch Pediatr 1999;6:7986 (in French). 24 Klassen AF, Landgraf JM, Lee SK, et al. Health related quality of life in 3 and 4 year old children and their parents: preliminary ndings about a new questionnaire. Health Qual Life Outcomes 2003;1: 81. 25 Fekkes M, Theunissen NC, Brugman E, et al. Development and psychometric evaluation of the TAPQOL: a health-related quality of life instrument for 15-year-old children. Qual Life Res 2000; 9:96172. 26 Saigal S, Rosenbaum P, Stoskopf B, et al. Development, reliability and validity of a new measure of overall health for pre-school children. Qual Life Res 2005;14:24357. 27 Ravens-Sieberer U, Gosch A, Rajmil L, et al. The KIDSCREEN-52 quality of life measure for children and adolescents: psychometric results from a crosscultural survey in 13 European countries. Value Health (in press).

Solans et al.
28 Ravens-Sieberer U, Auquier P, Erhart M, et al. The KIDSCREEN-27 quality of life measure for children and adolescentspsychometric results from a crosscultural survey in 13 European countries. Qual Life Res 2007;16:134756. 29 Nathan PC, Furlong W, Horsman J, et al. Interobserver agreement of a comprehensive health status classication system for pre-school children among patients with Wilms tumor or advanced neuroblastoma. Qual Life Res 2004;13:170714. 30 Spencer NJ, Coe C. The development and validation of a measure of parent-reported child health and morbidity: the Warwick Child Health and Morbidity Prole. Child Care Health Dev 1996;22:36779. 31 Maylath NS. Development of the Childrens Health Ratings Scale. Health Educ Q 1990;17:8997. 32 Eiser C, Cotter I, Oades P, et al. Health-related quality-of-life measures for children. Int J Cancer 1999;12(Suppl.):S8790. 33 Eiser C, Vance YH, Seamark D. The development of a theoretically driven generic measure of quality of life for children aged 612 years: a preliminary report. Child Care Health Dev 2000;26:44556. 34 Wasson JH, Kairys SW, Nelson EC, et al. A short survey for assessing health and social problems of adolescents. Dartmouth Primary Care Cooperative Information Project (The COOP). J Fam Pract 1994;38:48994. 35 Wasson JH, Kairys SW, Nelson EC, et al. Adolescent health and social problems. A method for detection and early management. The Dartmouth Primary Care Cooperative Information Project (COOP). Arch Fam Med 1995;4:516. 36 Raphael D, Rukholm E, Brown I, et al. The Quality of Life ProleAdolescent Version: background, description, and initial validation. J Adolesc Health 1996;19:36675. 37 Apajasalo M, Sintonen H, Holmberg C, et al. Quality of life in early adolescence: a sixteendimensional health-related measure (16D). Qual Life Res 1996;5:20511. 38 Apajasalo M, Rautonen J, Holmberg C, et al. Quality of life in pre-adolescence: a 17-dimensional health-related measure (17D). Qual Life Res 1996; 5:5328. 39 Collier J, MacKinlay D, Phillips D. Norm values for the Generic Childrens Quality of Life Measure (GCQ) from a large school-based sample. Qual Life Res 2000;9:61723. 40 Eiser C, Havermans T, Craft A, et al. Development of a measure to assess the perceived illness experience after treatment for cancer. Arch Dis Child 1995;72:3027. 41 Eiser C, Kopel S, Cool P, et al. The Perceived Illness Experience Scale (PIE): reliability and validity revisited. Child Care Health Dev 1999;25:17990. 42 Simeoni MC, Auquier P, Antoniotti S, et al. Validation of a French health-related quality of life instrument for adolescents: the VSP-A. Qual Life Res 2000;9:393403. 43 Sapin C, Antoniotti S, Simeoni MC, et al. Shortening the VSP-A: preliminary development of the

HRQOL Instruments for Children and Adolescents

VSP-A12, a 12-item short-form. Qual Life Res 2004; 13:23541. Edwards TC, Huebner CE, Connell FA, et al. Adolescent quality of life. Part I: conceptual and measurement model. J Adolesc 2002;25:27586. Patrick DL, Edwards TC, Topolski TD. Adolescent quality of life. Part II: initial validation of a new instrument. J Adolesc 2002;25:287300. Endicott J, Nee J, Yang R, et al. Pediatric Quality of Life Enjoyment and Satisfaction Questionnaire (PQLES-Q): reliability and validity. J Am Acad Child Adolesc Psychiatry 2006;45:4017. Fuh JL, Wang SJ, Lu SR, et al. Assessing quality of life for adolescents in Taiwan. Psychiatry Clin Neurosci 2005;59:1118. Vo TX, Guillemin F, Deschamps JP. Psychometric properties of the DUKE Health Prole-adolescent version (DHP-A): a generic instrument for adolescents. Qual Life Res 2005;14:222934. Ng TP, Lim LC, Jin A, Shinfuku N. Ethnic differences in quality of life in adolescents among Chinese, Malay and Indians in Singapore. Qual Life Res 2005;14:175568. Stein RE, Jessop DJ. Functional status II (R). A measure of child health status. Med Care 1990; 28:104155. Beattie PE, Lewis-Jones MS. A comparative study of impairment of quality of life in children with skin disease and children with other chronic childhood diseases. Br J Dermatol 2006;155:14551. Vogels T, Verrips GH, Verloove-Vanhorick SP, et al. Measuring health-related quality of life in children: the development of the TACQOL parent form. Qual Life Res 1998;7:45765. Ravens-Sieberer U, Bullinger M. Assessing healthrelated quality of life in chronically ill children with the German KINDL: rst psychometric and content analytical results. Qual Life Res 1998;7:399 407. Manicat S, Dazord A. Childrens quality of life assessment: preliminary results obtained with the AUQUEI questionnaire. Qual Life Newsl 1998; 19:23. Parsons SK, Barlow SE, Levy SL, et al. Healthrelated quality of life in pediatric bone marrow transplant survivors: according to whom? Int J Cancer 1999;12(Suppl.):S4651. Stareld B, Bergner M, Ensminger M, et al. Adolescent health status measurement: development of the Child Health and Illness Prole. Pediatrics 1993;91:4305. Stareld B, Riley AW, Green BF, et al. The adolescent child health and illness prole. A populationbased measure of health. Med Care 1995;33: 55366. Rebok G, Riley A, Forrest C, et al. Elementary school-aged childrens reports of their health: a cognitive interviewing study. Qual Life Res 2001; 10:5970. Riley AW, Forrest CB, Rebok GW, et al. The Child Report Form of the CHIP-Child Edition: reliability and validity. Med Care 2004;42:22131.

761
60 Graham P, Stevenson J, Flynn D. A new measure of health-related quality of life for children: preliminary ndings. Psychol Health 1997;12:65565. 61 Bruil J. Development of a quality of life instrument for children with chronic illness. [Doctoral Thesis]. Leiden: Health Psychology 1999:95141. 62 Landgraf JM, Abetz L, Ware JE. The CHQ Users Manual (1st ed.). Boston, MA: The Health Institute, New England Medical Center, 1996. 63 Feeny D, Furlong W, Barr RD, et al. A comprehensive multiattribute system for classifying the health status of survivors of childhood cancer. J Clin Oncol 1992;10:9238. 64 Boyle MH, Furlong W, Feeny D, et al. Reliability of the Health Utilities IndexMark III used in the 1991 cycle 6 Canadian General Social Survey Health Questionnaire. Qual Life Res 1995;4:249 57. 65 Lindstrom B, Kohler L. Youth, disability and quality of life. Pediatrician 1991;18:1218. 66 Lindstrom B, Eriksson B. Quality of life among children in the Nordic countries. Qual Life Res 1993;2:2332. 67 Varni JW, Seid M, Rode CA. The PedsQL: measurement model for the pediatric quality of life inventory. Med Care 1999;37:12639. 68 Varni JW, Seid M, Kurtin PS. PedsQL 4.0: reliability and validity of the Pediatric Quality of Life Inventory version 4.0. generic core scales in healthy and patient populations. Med Care 2001;39:800 12. 69 Verrips EG, Vogels TG, Koopman HM, et al. Measuring health-related quality of life in a child population. Eur J Public Health 1999;9:18893. 70 Theunissen NC, Vogels TG, Koopman HM, et al. The proxy problem: child report versus parent report in health-related quality of life research. Qual Life Res 1998;7:38797. 71 Lawford J, Volavka N, Eiser C. A generic measure of Quality of Life for children aged 38 years: results of two preliminary studies. Pediatr Rehabil 2001; 4:197207. 72 Collier J. Developing a generic child quality of life measure. Br J Health Psych 1997;28:1216. 73 Juniper EF, Guyatt GH, Dolovich J. Assessment of quality of life in adolescents with allergic rhinoconjunctivitis: development and testing of a questionnaire for clinical trials. J Allergy Clin Immunol 1994;93:41323. 74 Juniper EF, Guyatt GH, Feeny DH, et al. Measuring quality of life in the parents of children with asthma. Qual Life Res 1996;5:2734. 75 Tauler E, Vilagut G, Grau G, et al. The Spanish version of the paediatric asthma quality of life questionnaire (PAQLQ): metric characteristics and equivalence with the original version. Qual Life Res 2001;10:8191. 76 Skinner TC, Hoey H, McGee HM, Skovlund SE. A short form of the Diabetes Quality of Life for Youth questionnaire: exploratory and conrmatory analysis in a sample of 2,077 young people with type 1 diabetes mellitus. Diabetologia 2006;49:6218.

44 45 46

47 48

49

50 51

52

53

54

55

56

57

58

59

762
77 Bullinger M, Petersen C, Schmidt S, et al. European paediatric health-related quality of life assessment. Qual Life Newsl 2002;29:56. 78 Bullinger M, Schmidt S, Petersen C. Assessing quality of life of children with chronic health conditions and disabilities: a European approach. Int J Rehabil Res 2002;25:197206. 79 Bullinger M, Von Mackensen S, Fischer K, et al. Pilot testing of the Haemo-QoL quality of life questionnaire for haemophiliac children in six European countries. Haemophilia 2002;8(Suppl. 2):S4754. 80 Bullinger M, Von Mackensen S. Quality of life in children and families with bleeding disorders. J Pediatr Hematol Oncol 2003;25(Suppl. 1):S647. 81 Bhatia S, Jenney ME, Wu E, et al. The MinneapolisManchester Quality of Life instrument: reliability and validity of the Youth Form. J Pediatr 2004; 145:3946. 82 Bhatia S, Jenney ME, Bogue MK, et al. The Minneapolis-Manchester Quality of Life instrument: reliability and validity of the Adolescent Form. J Clin Oncol 2002;20:46928. 83 von MS, Nilsson C, Jankovic M, et al. Development of a disease-specic quality of life questionnaire for children & adolescents with idiopathic thrombocytopenic purpura (ITP-QoL). Pediatr Blood Cancer 2006;47(5 Suppl.):S68891. 84 Pollak E, Muhlan H, von MS, et al. The HaemoQoL Index: developing a short measure for healthrelated quality of life assessment in children and adolescents with haemophilia. Haemophilia 2006; 12:38492. 85 Bower WF, Wong EM, Yeung CK. Development of a validated quality of life tool specic to children with bladder dysfunction. Neurourol Urodyn 2006;25: 2217. 86 Singh G, Athreya BH, Fries JF, et al. Measurement of health status in children with juvenile rheumatoid arthritis. Arthritis Rheum 1994;37:17619. 87 Duffy CM, Arsenault L, Duffy KN, et al. The Juvenile Arthritis Quality of Life Questionnaire development of a new responsive index for juvenile rheumatoid arthritis and juvenile spondyloarthritides. J Rheumatol 1997;24:73846. 88 Parkin PC, Kirpalani HM, Rosenbaum PL, et al. Development of a health-related quality of life instrument for use in children with spina bida. Qual Life Res 1997;6:12332. 89 Juniper EF, Howland WC, Roberts NB, et al. Measuring quality of life in children with rhinoconjunctivitis. J Allergy Clin Immunol 1998;101 (2 Pt 1):16370. 90 Roberts G, Hurley C, Lack G. Development of a quality-of-life assessment for the allergic child or teenager with multisystem allergic disease. J Allergy Clin Immunol 2003;111:4917. 91 Rutishauser C, Sawyer SM, Bond L, et al. Development and validation of the Adolescent Asthma Quality of Life Questionnaire (AAQOL). Eur Respir J 2001;17:528. 92 Mishoe SC, Baker RR, Poole S, et al. Development of an instrument to assess stress levels and quality of

Solans et al.
life in children with asthma. J Asthma 1998;35: 55363. Chiang LC, Tzeng LF, Fu LS, et al. Testing a questionnaire to measure asthma-related quality of life among children. J Nurs Scholarsh 2006;38:3836. Christie MJ, French D, Sowden A, et al. Development of child-centered disease-specic questionnaires for living with asthma. Psychosom Med 1993;55:5418. Asano M, Sugiura T, Miura K, et al. Reliability and validity of the self-report Quality of Life Questionnaire for Japanese School-aged Children with Asthma (JSCA-QOL v.3). Allergol Int 2006;55: 5965. Juniper EF, Guyatt GH, Feeny DH, et al. Measuring quality of life in children with asthma. Qual Life Res 1996;5:3546. Exposito D, Gebrero B, Olivares S, et al. Evaluacin de la calidad de vida en nios enfermos de cancer mediante el ECVNO y POQOLS. Psiquis 1996; 17:3838. Calaminus G, Weinspach S, Teske C, et al. Quality of life in children and adolescents with cancer. First results of an evaluation of 49 patients with the PEDQOL questionnaire. Klin Padiatr 2000;212: 21115. Wildrick D, Parker-Fisher S, Morales A. Quality of life in children with well-controlled epilepsy. J Neurosci Nurs 1996;28:1928. Young NL, Bradley CS, Blanchette V, et al. Development of a health-related quality of life measure for boys with haemophilia: the Canadian Haemophilia OutcomesKids Life Assessment Tool (CHOKLAT). Haemophilia 2004;10(Suppl. 1):S34 43. Rabbett H, Elbadri A, Thwaites R, et al. Quality of life in children with Crohns disease. J Pediatr Gastroenterol Nutr 1996;23:52833. Otley A, Smith C, Nicholas D, et al. The IMPACT questionnaire: a valid measure of health-related quality of life in pediatric inammatory bowel disease. J Pediatr Gastroenterol Nutr 2002;35:557 63. Reid DT, Renwick RM. Preliminary validation of a new instrument to measure life satisfaction in adolescents with neuromuscular disorders. Int J Rehabil Res 1994;17:1848. Voskuijl WP, van der Zaag-Loonen HJ, Ketel IJ, et al. Health related quality of life in disorders of defecation: the Defecation Disorder List. Arch Dis Child 2004;89:11247. Landgraf JM, Rich M, Rappaport L. Measuring quality of life in children with attention-decit/ hyperactivity disorder and their families: development and evaluation of a new tool. Arch Pediatr Adolesc Med 2002;156:38491. Gherunpong S, Tsakos G, Sheiham A. Developing and evaluating an oral health-related quality of life index for children; the CHILD-OIDP. Community Dent Health 2004;21:1619. Macran S, Birks Y, Parsons J, et al. The development of a new measure of quality of life for children with

93 94

95

96 97

98

99 100

101 102

103

104

105

106

107

HRQOL Instruments for Children and Adolescents

congenital cardiac disease. Cardiol Young 2006; 16:16572. Ingersoll GM, Marrero DG. A modied quality-oflife measure for youths: psychometric properties. Diabetes Educ 1991;17:11418. Lewis-Jones MS, Finlay AY. The Childrens Dermatology Life Quality Index (CDLQI): initial validation and practical use. Br J Dermatol 1995;132:942 9. Abu-Saad HH, Pool H, Tulkens B. Further validity testing of the Abu-Saad Paediatric Pain Assessment Tool. J Adv Nurs 1994;19:106371. Pilpel D, Leiberman E, Zadik Z, et al. Effect of growth hormone treatment on quality of life of short-stature children. Horm Res 1995;44:15. Vasiliadis E, Grivas TB, Gkoltsiou K. Development and preliminary validation of Brace Questionnaire (BrQ): a new instrument for measuring quality of life of brace treated scoliotics. Scoliosis 2006;1:7. Climent JM, Reig A, Sanchez J, et al. Construction and validation of a specic quality of life instrument for adolescents with spine deformities. Spine 1995; 20:200611. Feise RJ, Donaldson S, Crowther ER, et al. Construction and validation of the scoliosis quality of life index in adolescent idiopathic scoliosis. Spine 2005;30:131015. Chiou CF, Weaver MR, Bell MA, et al. Development of the multi-attribute Pediatric Asthma Health Outcome Measure (PAHOM). Int J Qual Health Care 2005;17:2330. Usherwood TP, Scrimgeour A, Barber JH. Questionnaire to measure perceived symptoms and disability in asthma. Arch Dis Child 1990;65:77981. Bukstein DA, McGrath MM, Buchner DA, et al. Evaluation of a short form for measuring healthrelated quality of life among pediatric asthma patients. J Allergy Clin Immunol 2000;105(2 Pt 1):24551. Armstrong FD, Toledano SR, Miloslavich K, et al. The Miami pediatric quality of life questionnaire: parent scale. Int J Cancer 1999;12(Suppl.):S1117. Goodwin DAJ, Boggs SR. Development and validation of the pediatric oncology quality of life scale (POQOL). Psychol Assess 1994;6:3218. Hoare P, Russell M. The quality of life of children with chronic epilepsy and their families: preliminary ndings with a new assessment measure. Dev Med Child Neurol 1995;37:68996. Cameld C, Breau L, Cameld P. Assessing the impact of pediatric epilepsy and concomitant behavioral, cognitive, and physical/neurologic disability: Impact of Childhood Neurologic Disability Scale. Dev Med Child Neurol 2003;45:1529. Kulkarni AV, Rabin D, Drake JM. An instrument to measure the health status in children with hydrocephalus: the Hydrocephalus Outcome Questionnaire. J Neurosurg 2004;101(2 Suppl.):13440. Holmes JM, Leske DA, Cole SR, et al. A symptom survey and quality of life questionnaire for nasolacrimal duct obstruction in children. Ophthalmology 2006;113:167580.

763
124 Lewis-Jones MS, Finlay AY, Dykes PJ. The infants dermatitis quality of life index. Br J Dermatol 2001;144:10410. 125 Rosenfeld RM, Goldsmith AJ, Tetlus L, et al. Quality of life for children with otitis media. Arch Otolaryngol Head Neck Surg 1997;123:1049 54. 126 Timmerman AA, Anteunis LJ, Meesters CM. Response-shift bias and parent-reported quality of life in children with otitis media. Arch Otolaryngol Head Neck Surg 2003;129:98791. 127 Kay DJ, Rosenfeld RM. Quality of life for children with persistent sinonasal symptoms. Otolaryngol Head Neck Surg 2003;128:1726. 128 Stewart MG, Friedman EM, Sulek M, et al. Validation of an outcomes instrument for tonsil and adenoid disease. Arch Otolaryngol Head Neck Surg 2001;127:2935. 129 Boseley ME, Cunningham MJ, Volk MS, et al. Validation of the pediatric voice-related quality-of-life survey. Arch Otolaryngol Head Neck Surg 2006; 132:71720. 130 Herranz JL, Casas C. Escala de calidad de vida del nio con epilepsia (CAVE). Rev Neurol 1996;24:28 30. 131 Sabaz M, Cairns DR, Lawson JA, et al. Validation of a new quality of life measure for children with epilepsy. Epilepsia 2000;41:76574. 132 Phipps S, Hinds PS, Channell S, et al. Measurement of behavioral, affective, and somatic responses to pediatric bone marrow transplantation: development of the BASES scale. J Pediatr Oncol Nurs 1994;11:10917. 133 Varni JW, Burwinkle T, Katz ER, et al. The PedsQL in pediatric cancer: reliability and validity of the Pediatric Quality of Life Inventory Generic Core Scales, Multidimensional Fatigue Scale, and Cancer Module. Cancer 2002;94:2090106. 134 Yeh CH, Hung LC. Construct validity of newly developed quality of life assessment instrument for child and adolescent cancer patients in Taiwan. Psychooncology 2003;12:34556. 135 Cramer JA, Westbrook LE, Devinsky O, et al. Development of the Quality of Life in Epilepsy Inventory for Adolescents: the QOLIE-AD-48. Epilepsia 1999;40:111421. 136 Langeveld JH, Koot HM, Loonen MC, et al. A quality of life instrument for adolescents with chronic headache. Cephalalgia 1996;16:18396. 137 Barnard D, Woloski M, Feeny D, et al. Development of disease-specic health-related quality-of-life instruments for children with immune thrombocytopenic purpura and their parents. J Pediatr Hematol Oncol 2003;25:5662. 138 Franco RA Jr, Rosenfeld RM, Rao M. First placeresident clinical science award 1999. Quality of life for children with obstructive sleep apnea. Otolaryngol Head Neck Surg 2000;123(1 Pt 1):916. 139 Waters E, Davis E, Mackinnon A, et al. Psychometric properties of the quality of life questionnaire for children with CP. Dev Med Child Neurol 2007; 49:4955.

108 109

110 111 112

113

114

115

116 117

118 119 120

121

122

123

764
140 Henry B, Aussage P, Grosskopf C, et al. Constructing a disease-specic quality of life questionnaire for children and adults with cystic brosis. Isr J Med Sci 1996;32(Suppl.):S181. 141 Skinner TC, Howells L, Greene S, et al. Development, reliability and validity of the Diabetes Illness Representations Questionnaire: four studies with adolescents. Diabet Med 2003;20:2839. 142 Cook S, Aikens JE, Berry CA, et al. Development of the diabetes problem-solving measure for adolescents. Diabetes Educ 2001;27:86574. 143 Jokovic A, Locker D, Stephens M, et al. Validity and reliability of a questionnaire for measuring child oral-health-related quality of life. J Dent Res 2002; 81:45963. 144 Jokovic A, Locker D, Guyatt G. Short forms of the Child Perceptions Questionnaire for 1114-year-old children (CPQ11-14): development and initial evaluation. Health Qual Life Outcomes 2006;4:4. 145 Maia Filho HS, Gomes MM, Fontenelle LM. Development and validation of a health related quality of life questionnaire for Brazilian children with epilepsy: preliminary ndings. Arq Neuropsiquiatr 2005;63:38994. 146 Cremeens J, Eiser C, Blades M. Characteristics of Health-related Self-report Measures for Children Aged Three to Eight Years: a Review of the Literature. Qual Life Res 2006;15:73954. 147 Embretson SE, Reise SP. Item Response Theory for Psychologists. London: Lawrence Erlbaum Associates, 2000. 148 van der Linden WJ, Hambleton RK, eds. Handbook of Modern Item Response Theory. New York: Springer, 1997. 149 van der Linden WJ, Glas CAW. Computerized Adaptative Testing. Theory and Practice. Dordrecht: Kluwer, 2000. 150 Ravens-Sieber U, Heilmann M, Walleser S. Assessment of quality of life in young children with a computer assisted touch screen program (Catscreen)reliability, validity and feasibility [Abstract

Solans et al.
1320]. Proceedings of the 7th Annual conference of the International Society for Quality of Life Research 2931 October 2000. Vancouver, Canada. Qual Life Res 2000;9:2456. Bller H. Assessment of quality of life in the younger child: the use of an animated computer program. J Pediatr Gastroenterol Nutr 1999;28:S535. Fliege H, Becker J, Walter OB, et al. Development of a computer-adaptive test for depression (D-CAT). Qual Life Res 2005;14:227791. Skevington SM. Advancing cross-cultural research on quality of life: observations drawn from the WHOQOL development. World Health Organisation Quality of Life Assessment. Qual Life Res 2002;11:13544. Jenkinson C. Quality of life measurement: does it have a place in routine clinical assessment? J Psychosom Res 1994;38:37781. Albrecht G. Using subjective health assessments in practice and policy-making. Health Care Anal 1996;4:28492. Schwartz CE, Rapkin BD. Reconsidering the psychometrics of quality of life assessment in light of response shift and appraisal. Health Qual Life Outcomes 2004;2:16. Rapkin BD, Schwartz CE. Toward a theoretical model of quality-of-life appraisal: implications of ndings from studies of response shift. Health Qual Life Outcomes 2004;2:14. Matza LS, Secnik K, Mannix S, et al. Parent-proxy EQ-5D ratings of children with attention-decit hyperactivity disorder in the US and the UK. Pharmacoeconomics 2005;23:77790. Griebsch I, Coast J, Brown J. Quality-adjusted lifeyears lack quality in pediatric care: a critical review of published cost-utility studies in child health. Pediatrics 2005;115:e60014. Jokovic A, Locker D, Tompson B, et al. Questionnaire for measuring oral health-related quality of life in eight- to 10-year-old children. Pediatr Dent 2004;26:51218.

151 152 153

154 155 156

157

158

159

160