Measures of health status and quality of life in juvenile rheumatoid arthritis: Pediatric Quality of Life Inventory (PedsQL) Rheumatology Module 3.0, Juvenile Arthritis Quality of Life Questionnaire (JAQQ), Paediatric Rheumatology Quality of Life Scale (PRQL), and Childhood Arthritis Health Profile (CAHP)

Authors


INTRODUCTION

In this review, we describe four measures of health-related quality of life (HRQOL) designed for children with juvenile rheumatoid arthritis. HRQOL generally refers to how an individual feels about aspects of their life in relation to their health. The World Health Organization originally described HRQOL as minimally including physical, mental, and social health dimensions (1). Subsequent definitions, although varied, have incorporated the fact that individuals have an important and distinct viewpoint regarding their disease and quality of life (2). They have also emphasized the subjective nature of HRQOL (2). These features present unique challenges when measuring HRQOL in children. A child's age and cognitive development may limit their ability to answer and understand questions, requiring proxy-report. Yet research suggests that parents and children do not always view HRQOL similarly and that these differences represent valid differences (3–5). Thus, for each of the measures below, users should evaluate strengths and weaknesses with respect to the perspective(s) they wish to measure and a child's developmental status.

PEDIATRIC QUALITY OF LIFE INVENTORY (PEDSQL) RHEUMATOLOGY MODULE 3.0

Description

Purpose.

Varni et al in 1999 (6), designed the PedsQL Generic Core Scales as a generic health-related quality of life (HRQOL) measure for use across the heterogeneous pediatric population, including healthy children and children with diseases. Whereas in 2002, Varni et al (7) developed the PedsQL Rheumatology Module 3.0 to measure pediatric rheumatology-specific HRQOL. The Rheumatology Module measures HRQOL aspects uniquely important to children with rheumatic diseases and complements the core scales. The Rheumatology Module fits within Varni and colleagues' broader efforts to measure HRQOL in pediatric health conditions using the PedsQL Generic Core Scales (6–8).

Content.

The 22-item Rheumatology Module measures 5 dimensions: pain-hurt, daily activities, treatment, worry, and communication.

Number of items.

22 items comprise the Rheumatology Module: pain-hurt (4 items), daily activities (5 items), treatment (7 items), worry (3 items), and communication (3 items).

Recall period for items.

Respondent's answers address the past month.

Endorsements.

None.

Examples of use.

Research has used the Rheumatoid Module to examine HRQOL for children with juvenile rheumatoid arthritis (JRA) and children generally (9, 10), to investigate coping among children with JRA (11), and explore outcomes (12, 13), among other topics.

Practical Application

How to obtain.

A copy can be obtained online at www.pedsql.org. The site includes a detailed fee structure description.

Method of administration.

The PedsQL Rheumatology Module 3.0 uses parent (proxy) report and child self-report to measure HRQOL. Varni et al (7) report that, when possible, one should measure both parent and child perspectives. Rheumatology Module questions use a 5-point ordinal (i.e., polytomous) scale for a child self-report (ages 8–17 years) and parent proxy-report (ages 2–17 years). Options range from 0 = never a problem to 4 = almost always a problem. Children ages 5–7 years answer using a simplified 3-point scale, with each response anchored to a happy-to-sad-faces scale. A self-report form does not exist for children ages 2–5 years, relying instead on parent proxy-report to measure HRQOL for this age group. Additionally, for children ages 2–5 years, parent proxy-report does not include the worry and communication scales.

Scoring.

Items are reverse coded and linearly transformed to a 0–100 scale (e.g., 0 = 100 to 4 = 0). Each scale score equals the average of the transformed items answered in a given scale. For scales with more than 50% missing data, one does not compute a scale score. However, research suggests little missing data occur (7).

Score interpretation.

High scores correspond to better quality of life. Cut-scores and minimum clinically important differences have not been established.

Respondent burden.

Administration takes approximately 15 minutes for child self-report and 10 minutes for parent proxy-report.

Administrative burden.

No data available.

Translations/adaptations.

In addition to English, independent research groups have created French, German, Italian, Russian, Slovenian, and Spanish translations. Research has not yet validated these translations (14).

Psychometric Information

Method of development.

Varni et al (7) developed the Rheumatology Module using their experience developing previous HRQOL measures, a review of the literature, patient and parent focus groups, item generation, cognitive interviews, pretesting, and field testing of the final instrument in a sample of the target population.

Acceptability.

Little missing data on the Rheumatology Module appear to occur (generally <2%) and sufficient proportions of respondents endorse each category.

Reliability.

Varni et al (7) examined the reliability and validity of the PedsQL Rheumatology Module 3.0 in a sample of 231 children ages 5–18 years and 244 parents of these (and additional) children ages 5–18 years. Parents and children (ages 8–18 years) self-administered the measures. An interviewer administered the measures to children ages 5–7 years. Cronbach's alpha across scales and forms generally demonstrated acceptable reliability for research, with the majority exceeding 0.70. Several parent proxy-report Cronbach's α >0.90. However, Cronbach's alpha for children ages 5–7 years self-report were generally poor, limiting child self-report for this age range.

Validity.

Varni et al (7) demonstrated construct validity by using analysis of variance (ANOVA) to compare groups of children known to differ in the investigated health construct. These analyses found statistically significant differences across several different groups of children with different types of rheumatic diseases (e.g., fibromyalgia versus other rheumatic diseases) for both self-report and proxy-report, supporting construct validity. The authors also established construct validity by examining intercorrelations among the PedsQL total score and the Rheumatology Module scale sores. They found medium to large effect size correlations.

Ability to detect change.

The authors (7) demonstrated responsiveness by examining change across time among patients for whom a change was expected. Repeated-measures ANOVAs showed responsiveness for the pain and hurt scale.

Critical Appraisal of Overall Value to the Rheumatology Community

Strengths.

The PedsQL Rheumatology Module 3.0 constitutes a relatively well-validated measure of multiple dimensions of HRQOL specifically important to children with rheumatic diseases. When accompanied by the PedsQL Generic Core Scales, the two measures reliably and validly cover a broad range of HRQOL dimensions. Varni et al (7) specifically developed the Rheumatology Module to span a very broad age range for child self-report and an even broader age range when including parent-report. Moreover, they accomplished this while maintaining consistent items and scales across forms. This increases the comparability of scores across a wide range of ages and, for a given child, increases comparability across the child's life span.

Caveats and cautions.

Some features limit the Rheumatology Module. Research has not used item response theory, structural equation modeling, or confirmatory factor analysis. Without this research, the internal validity of the Rheumatology Module remains unestablished, which limits interpretability. Finally, the translations have not been examined.

Clinical usability.

Research supports usability.

Research usability.

Research supports usability.

JUVENILE ARTHRITIS QUALITY OF LIFE QUESTIONNAIRE (JAQQ)

Description

Purpose.

Duffy et al (15) developed the JAQQ to measure health-related quality of life (HRQOL) among children with juvenile rheumatoid arthritis (JRA) and juvenile spondylarthritis. They sought to create an easy to use, responsive instrument that measured multiple domains that could uniquely measure areas of importance to individual children.

Content.

The JAQQ measures gross motor function, fine motor function, psychosocial function, and general symptoms.

Number of items.

The instrument includes a total of 74 items: gross motor function (17 items), fine motor function (16 items), psychosocial function (22 items), and general symptoms (19 items).

Response options/scale.

Each item uses a 7-point ordinal scale ranging from 1 (none of the time) to 7 (all of the time). The JAQQ also includes a measure of pain (100-mm pain visual analog scale).

Recall period for items.

No data available.

Endorsements.

None.

Examples of use.

Several avenues of research have included the JAQQ: research comparing parent and child perceptions of HRQOL (16), studies describing the HRQOL of children with juvenile rheumatoid arthritis (17), and outcome studies (18–20).

Practical Application

How to obtain.

Copy of the JAQQ can be obtained from Dr. Ciarán Duffy (E-mail: ciaran.duffy@muhc.mcgill.ca).

Method of administration.

Parents and/or children (>9 years) self-administer the JAQQ.

Scoring.

Respondents answer all items each time they receive the JAQQ. However, at first administration, patients identify 5 items in each domain with which they have the most difficulty. Each dimension's scores are computed as the unweighted average of the 5 items, at baseline and followup. The total score equals the unweighted average of the dimension scores. Respondents can also volunteer items when completing the JAQQ. These patient- generated items can become part of the dimensional score if they are among the 5 identified items. Duffy et al report that this “ensures … patient input is incorporated” (15). Change scores comprise differences between administrations.

Score interpretation.

High scores correspond to poorer HRQOL.

Respondent burden.

The measure takes ∼20 minutes to complete at first administration and 5 minutes on subsequent administrations.

Administrative burden.

Scoring takes approximately 5–10 minutes.

Translations/adaptations.

English, French, and Dutch versions exist.

Psychometric Information

Method of development.

An expert panel generated the initial item set. After translating into French and back translating into English, the authors pretested the English and French versions of the questionnaire by interviewing 10 rheumatology clinic patients (parents and children). Final development occurred among 91 patients from the Montreal Children's Hospital arthritis clinic. This included interviews with parents of 40 of the children. Initially-generated items were classified into dimensions by expert opinion and reduced by expert opinion and cluster analysis. In this phase, a school/cognitive function dimension was deleted. The reduction process resulted in 85 items in the 4 domains.

Acceptability.

No data available.

Reliability.

Using a sample of 369 English children, Shaw et al (17) reported the following Cronbach's alpha values: 0.94 for the gross motor domain, 0.97 for the fine motor domain, 0.93 for the psychosocial domain, 0.88 for the general domain, and 0.96 for the entire scale. To more validly estimate reliability, the authors computed these coefficients based on children's responses to all of the items in the JAQQ (rather than the individualized subset of the most problematic items).

Validity.

Pretesting and validation used a sample of 30 patients from the same clinic. To establish construct validity, Duffy et al (15) examined the correlation of the JAQQ dimension and total score with measures of joint disease activity and pain. The authors found moderate correlations between the JAQQ and measure of joint disease activity, with the highest correlations occurring between the JAQQ total score and the fine motor dimension with the sum of joint severity score (r = 0.35 and 0.36, respectively). JAQQ scores correlated relatively well with pain scores, while correlations for the psychosocial dimension were low to moderate with diseases activity (r = 0.19) and pain (r = 0.34). The authors observed mixed correlations for the general symptoms dimension with other scores. These correlations corresponded to the authors' a priori hypotheses, indicating construct validity. With respect to face and content validity, 95% of the 20 experts agreed that the JAQQ addressed the dimensions it claims to measure and more than 80% accepted each of the individual items.

Ability to detect change.

To determine responsiveness, the authors compared correlations between JAQQ change scores and change scores on other included measures based on a priori predictions. They found that these correlations generally corresponded to the construct validity pattern (e.g., best between mean JAQQ and pain). Additionally, they indirectly demonstrated responsiveness by showing that the JAQQ discriminated among patients using physician-based global health categorizations. In other work (published as abstracts), Duffy and colleagues have further established the ability of the JAQQ to detect change (21, 22). Research has not established cut points or minimum clinically important differences for the JAQQ, nor do normative data exist.

Critical Appraisal of Overall Value to the Rheumatology Community

Strengths.

The JAQQ offers a rheumatology-specific measure that incorporates a range of items relevant to a child's physical and psychosocial health and functional status. Duffy et al (15) report that the JAQQ presents a clinical advantage over other measures because it offers individualized assessment. Each child selects the 5 most problematic items in each domain and only these items are scored on the initial and subsequent administrations. This potentially increases the instrument's sensitivity to clinical change and may make it especially useful in clinical settings focused on an individual child. However, this essentially renders the instrument unusable in research. In essence, no 2 children complete the same measure making comparisons across children impossible. It also limits the JAQQ's discriminant validity. Duffy et al (15) have reported that the unique scoring system makes the JAQQ especially suited to clinical trials. However, it is not clear that this is an advantage because the meaning of a change score differs across children, obscuring results describing average change (see Crocker and Algina [23], McDonald [24], or Nunnally and Berstein [25] for discussions of the psychometric properties that scores should have to make them useful in research.)

Caveats and cautions.

In pretesting, the authors identified items patients rarely or never endorsed, as well as items that appeared to measure similar things as other items on the 85-item questionnaire. As a result, they trimmed an additional 11 items, resulting in a total of 74 items in 4 dimensions (described above). Thus, while the current form of the JAQQ has 74 items, the validity data correspond to the 85-item version, warranting some caution regarding the validity of the present version. As another limit, published research has not used item response theory, structural equation modeling, or confirmatory factor analysis to evaluate the psychometric properties of the JAQQ. This transpires partly because of the unique method by which patients and parents complete the measure. Without this research, the internal validity and measurement structure of the JAQQ remains unclear, which limits the scales' interpretability. Perhaps future research will make use of item response theory and develop a computerized adaptive test (26) version of the JAQQ, which would simultaneously offer an assessment tailored to a child while still delivering a score comparable across children. The JAQQ does not include a specific dimension to measure HRQOL with respect to school and cognitive ability, which limits the JAQQ's coverage of important HRQOL dimensions in childhood. Finally, research has not investigated the translations.

Clinical usability.

The unique scoring system of the JAQQ may make it especially useful in clinical work. By including patient-generated items, the JAQQ should capture important HRQOL issues.

Research usability.

Currently unresolved key issues (e.g., reliability and a score's meaning across children) limit its application in research.

PAEDIATRIC RHEUMATOLOGY QUALITY OF LIFE SCALE (PRQL)

Description

Purpose.

Believing that the length of existing pediatric health-related quality of life (HRQOL) measures limits their use in clinical care, Filocamo et al (27) sought to develop and validate a short HRQOL measure specific to pediatric rheumatic disease.

Content.

The PRQL measures physical health (PhH) and psychosocial health (PsH).

Number of items.

The PRQL comprises 10 items total, 5 for each subscale.

Response options/scale.

Both parent and child forms use a 4-point ordinal scale (0 = never to 3 = all the time) to measure the frequency of symptoms in the previous month for all items.

Recall period for items.

Respondents apply their answers to the previous month.

Endorsements.

None.

Examples of use.

Other than the study describing its development, no examples of the PRQL's use yet exist.

Practical Application

How to obtain.

One can obtain a copy of the parent and child English versions of the instrument by downloading the supplemental material accompanying the article that describes the scale's development (27).

Method of administration.

The PRQL has parent proxy-report and child self-report forms.

Scoring.

The PhH and PsH scores constitute the total sum of the item responses for each subscale respectively or the total sum for items within each subscale (with specific instructions for scoring items marked not applicable). The total score ranges 0–30, and separate subscale (PhH and PsH) scores each range 0–15. The authors instruct users not to create a total score if more than 2 questions are marked inapplicable in a given scale. The PhH and PsH scores constitute the total sum of the item responses for each subscale respectively or the total sum for items within each subscale (with specific instructions for scoring items marked not applicable).

Score interpretation.

High scores correspond to poorer functioning.

Respondent burden.

Completion takes ∼5 minutes or less.

Administrative burden.

Scoring takes ∼5 minutes or less.

Translations/adaptations.

The PRQL has both Italian and English versions. However, research has not examined the psychometric properties of the English translation of the PRQL.

Psychometric Information

Method of development.

A panel of 6 pediatric rheumatologists developed the PRQL. The panel initially identified and derived 389 items through a review of the literature and existing pediatric HRQOL measures, discussion, and semistructured face-to-face interviews with 37 children with pediatric rheumatic diseases and their parents. Subsequently, the panel kept 25 items relevant to the 2 desired domains, general to all pediatric rheumatic diseases, applicable to children of all ages, which expressed a single idea, and about which the entire panel agreed the questionnaire should include. The developers then asked another expert panel (that included pediatric rheumatologists and others) and a convenience sample of 42 children and their parents to comment on and criticize the draft measure. This resulted in the deletion of 15 additional items, ending at the final 10-item measure.

Acceptability.

No data available.

Reliability.

Using a predominantly female sample (77%) of 472 children with juvenile rheumatoid arthritis, the authors evaluated the psychometric properties of the Italian PRQL. To assess reliability, Filocamo et al (27) had 35 parents complete the PRQL a second time within 24 hours. This resulted in test–retest reliability coefficients of 0.91 for the total score, 0.85 for the PhH subscale, and 0.92 for the PsH subscale. These values support the use of the total score and PsH subscale for use in individual patient analyses and the PhH scale in research (25).

Validity.

As part of the validation process, the authors report using exploratory factor analysis, with an orthogonal rotation (that forces all underlying factors to be uncorrelated) to examine the construct validity and internal structure of the PRQL. Internal validity refers to the extent to which data support the hypothesis that the question sets do indeed measure 2 separate constructs. These results indicated a 2-factor solution, providing support for creating 2 subscales. Subsequently, the authors evaluated construct validity by examining the extent to which the PRQL correlated with the Juvenile Arthritis Functioning Scale (JFAS), parent's and/or patient's global assessment of the child's well-being, and pain ratings. The authors predicted and generally observed moderate to high correlations in the expected direction for the PhH subscale with parent's assessment of both child's overall well-being, pain intensity, JAFS score, and tender and active joint counts. The remaining correlation for the PhH subscale and all correlations for the PsH subscale were poor.

In addition to construct validity, Filcamo et al assessed discriminative validity. They did this by examining whether differences in the median total PRQL scores corresponded in the expected direction to physicians' ratings of disease course, changes in disease outcome from previous visit, and assessment of morning stiffness. They also examined whether the proportion of children with a score of 0 (i.e., good HRQOL) corresponded to theoretical expectations across these groups. These results generally supported the PRQL's ability to discriminate (e.g., patients with >30 minutes of morning stiffness had the highest median scores). The authors also demonstrated responsiveness by examining whether patients and their parents rated HRQOL worse than healthy children rated their HRQOL. These results showed that only the PhH scale differentiated between these groups.

Finally, as part of the development process, the authors established face and content validity by consulting a panel of experts (which included pediatric rheumatologists). The entire panel indicated their support of the measure's face validity and the appropriateness and coverage of the measure's content. The authors also established face and content validity by asking a convenience sample of 42 children and their parents to complete and criticize the draft PRQL.

Ability to detect change.

The authors used the standardized response mean (SRM; the mean change score across children divided by the SD of the change scores) to evaluate responsiveness to clinical change using changes in parents' and patients' scores at a followup administration 3–9 months after baseline. The parent, patient, and physician ratings of disease course provided external criteria for the SRM. For patients rated as improved by a physician, the total score and both subscales were moderately responsive, however for patients rated as worsened, the total score and PhH subscale demonstrated small responsiveness and poor responsiveness for the PsH subscale. Filcamo et al also identified minimum clinically important differences (MCID) for the parent report. They computed MCID as the average change score that corresponded to a rating by the parent, patient, or physician as slightly improved or slightly worsened from the previous visit. MCID ranged from −1.7 (slightly improved) to 1.5 (slightly worsened) for the total score. However, the confidence intervals (CIs) for these overlapped the score for children with stable disease course. This problem was particularly pronounced for the subscale MCIDs, with the CIs for slightly improved and worsened overlapping even with each other. This indicates that more work is needed to establish MCIDs that discriminate well. Research has not established cut points or normative data.

Critical Appraisal of Overall Value to the Rheumatology Community

Strengths.

The PRQL delivers a very short measure of 2 dimensions of HRQOL relevant to children with rheumatic diseases. Although its brevity can be a strength (because patients can complete it quickly and clinicians can score it quickly), its brevity means that it does not cover the range of potentially important dimensions and aspects of HRQOL.

Caveats and cautions.

Like other measures of HRQOL specific to pediatric rheumatology, published research has not yet applied item response theory, structural equation modeling, or confirmatory factor analysis or other latent variable methods to evaluate the internal validity of the PRQL. Although the authors report conducting exploratory factor analyses, it is unclear whether they used an appropriate analytic technique. They report using factor analysis, but provide a reference for principal components analysis. Factor analyses would more validly have examined the question of interest (24). In addition, it is not clear whether they incorporated the ordered-categorical nature of the data in their model. Research shows that this can lead to spurious dimensions (28) and subsequently biased loading estimates. This limits the interpretability of the published results. Finally, while initial evidence seems to support the validity of the total and PhH subscale scores, the results did not strongly support the PsH subscale score. The psychometric properties of the English translation have not been examined.

Clinical usability.

The scale's brevity may make the total score and PhH scores potentially attractive in clinical settings.

Research usability.

Several issues (see Caveats and cautions above) limit the PRQL's use in research.

CHILDHOOD ARTHRITIS HEALTH PROFILE (CAHP)

Description

Purpose.

Tucker et al (29) developed the CAHP to capture a broad range of health statuses in children with juvenile rheumatoid arthritis (JRA).

Content.

The CAHP measures physical functioning, psychosocial functioning, and the disease's effect on the family. It was developed and is intended to be used with the Childhood Health Questionnaire (CHQ). The CAHP includes 3 modules: generic health status (measured by the CHQ), juvenile rheumatoid arthritis–specific scales, and patient characteristics.

Number of items.

No data available.

Response options/scale.

No data available.

Recall period for items.

No data available.

Endorsements.

None.

Examples of use.

Other than manuscripts discussing measures for measuring health-related quality of life (HRQOL) among children with JRA, we found no examples of the CAHP's use.

Practical Application

How to obtain.

No data available.

Method of administration.

Parents or teens (age ≥13 years) self administer the CAHP.

Scoring.

No data available.

Score interpretation.

No data available.

Respondent burden.

No data available.

Administrative burden.

No data available.

Translations/adaptations.

No data available.

Psychometric Information

Method of development.

The self-administered instrument was developed using prospective data from 80 children with JRA ages 5–15 years old. A multidisciplinary team that included a pediatric rheumatologist, physiotherapist, nurse, social worker, and a parent of a child with JRA generated the initial parent report CAHP items (30). To date, only an abstract (29) and secondary sources describe the CAHP (30–32).

Acceptability.

No data available.

Reliability.

Tucker et al (29) report reliability coefficients ranged from 0.84–0.97, supporting reliability.

Validity.

Tucker et al (29), focusing on the functional status scales, used factor analysis and multitrait analysis to determine the internal consistency and discriminant validity of the parent-report CAHP. Factor analyses identified 3 latent variables labeled gross motor function, fine motor function, and usual role activities, and the authors used the factor analysis results to assign items to 3 scales measuring these variables. Additional analyses indicated that 96% of the items had higher correlations with their assigned scales than with other scales, supporting discriminant validity. Finally, the specific functional status scales correlated 0.73 with the CHQ's generic physical functioning scale, indicating that the CAHP may measure aspects not captured by generic scales.

Ability to detect change.

No data available.

Critical Appraisal of Overall Value to the Rheumatology Community

Strengths.

Too little data exist to identify strengths.

Caveats and cautions.

Unfortunately, little detailed published work describes the psychometric properties of the CAHP or the methods by which previously reported psychometric properties were obtained. Research has not described the CAHP's response options, recall period, total number of items, scoring method, development or psychometric properties of the teen-report version, psychometric properties of the CAHP's other scales, or other important features of the CAHP. Additionally, it is not clear how one obtains a copy of the CAHP. These features limit its clinical and research utility.

Clinical usability.

Too little data exist to evaluate clinical usability.

Research usability.

Too little data exist to evaluate research usability.

DISCUSSION

Summarily, investigators have developed a variety of HRQOL measures designed for assessing HRQOL in juvenile rheumatoid arthritis. Hopefully, future research will address the psychometric properties and internal validity of these measures using structural equation modeling and item response theory, as well the relative utility of a disease-specific approach versus a more general approach (e.g., NIH's Patient Reported Outcomes Measurement Information System: PROMIS).

Table  . Summary Table for Pediatric HRQOL Measures in Juvenile Rheumatoid Arthritis*
ScalePurpose/contentMethod of administrationRespondent burdenAdministrative burdenInterpretationReliability evidenceValidity evidenceAbility to detect changeStrengthsCautions
  • *

    HRQOL = health-related quality of life; PedsQL = Pediatric Quality of Life Inventory Rheumatology Module 3.0; JAQQ = Juvenile Arthritis Quality of Life Questionnaire; PRQL = Paediatric Rheumatology Quality of Life Scale; PhH = physical health domain; PsH = Psychosocial health domain; SRM = standardized response mean; MCID = minimum clinically important difference; CAHP = Childhood Arthritis Health Profile; JRA = juvenile rheumatoid arthritis.

PedsQLMeasure broad range of rheumatology specific HRQOLParent proxy-report (ages 2–17 years) and child self-report (ages 5–17 years)20 minutesHand scoredScores range 0–100; high score indicates better HRQOLInternal consistency good for most forms and excellent for someFace, content, and construct validity establishedNot establishedSound psychometric properties; appropriate for research useInternal validity not established
JAQQMeasure multiple rheumatology specific HRQOL domains and uniquely measure areas of importance to individual childrenParent proxy-report and child self-report for children ≥9 years20 minutesHand scoredHigher scores indicate poorer HRQOLInternal consistency goodFace, content, and construct validity establishedNot establishedSeveral sound psychometric properties; useful for incorporating individualized HRQOL measurementScoring system limits interpretability and use; internal validity not established
PRQLBriefly measure 2 HRQOL domains, PhH, PsHParent proxy-report (ages 2–17 years) and child self-report<5 minutesHand scored <5 minutesTotal score range 0–30; subscales range 0–15; high scores indicate poorer HRQOLTest–retest excellent for total score and PsH; good for PhHFace, content, discriminative, and construct validity establishedSRM and MCID established (with caveats to MCID utility)Short, easily, and quickly administered and scoredLimited support for PsH scale
CAHPCapture a broad range of health statuses in children with JRAParent proxy-report and child self-report for children ≥13 years15 minutesUnknownUnknownReliability coefficients range 0.84–0.97Internal and discriminant validity partially establishedUnknownNot applicableLimited psychometric information; not recommended for clinical or research use

AUTHOR CONTRIBUTIONS

All authors were involved in drafting the article or revising it critically for important intellectual content, and all authors approved the final version to be published.

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