Comparative Psychometric Performance of Common Generic Paediatric Health-Related Quality of Life Instrument Descriptive Systems: Results from the Australian Paediatric Multi-Instrument Comparison Study

Abstract

Objective The aim of this study was to compare the psychometric performance of common generic paediatric health-related quality-of-life instrument descriptive systems (PedsQL generic core 4.0, EQ-5D-Y-3L, EQ-5D-Y-5L, Child Health Utility 9D [CHU9D], Assessment of Quality of Life 6D [AQoL-6D], and Health Utilities Index Mark 3 [HUI3]) by child age, report type, and health status. Methods Data for children aged 5–18 years were from the Australian Paediatric Multi-Instrument Comparison study. Ceiling effects, test–retest reliability, known-group validity, convergent and divergent validity, and responsiveness were assessed in the total sample and by child age (5–12 years vs 13–18 years), report type (self- vs proxy report), and health status. Instruments were scored using an exploratory level sum score (LSS) approach. Results Survey data were available for 5945 children, with follow-up data available for 2346 children. The EQ-5D-Y-3L demonstrated ceiling effects. The PedsQL, EQ-5D-Y-3L, EQ-5D-Y-5L, and CHU9D demonstrated acceptable test–retest reliability. All instruments demonstrated known-group, convergent, and divergent validity. The EQ-5D-Y-3L, EQ-5D-Y-5L, and CHU9D demonstrated responsiveness to improvements in health and the PedsQL, EQ-5D-Y-3L, EQ-5D-Y-5L, and CHU9D to worsening health. The AQoL-6D and HUI3 had inconclusive test–retest reliability and responsiveness evidence due to small sample size. Importantly, ceiling effects, test–retest reliability and responsiveness varied by subgroup. Conclusion Results reflect instrument performance using LSSs, which may differ to utility scores. In the total sample, the EQ-5D-Y-5L and CHU9D descriptive systems demonstrated evidence of good performance (i.e., meeting prespecified criteria) across all psychometric attributes tested. Performance varied by child age and report type, indicating room for considerations by population and study. Supplementary Information The online version contains supplementary material available at 10.1007/s40273-023-01330-2.

Comparing Generic Paediatric Health-Related Quality-of-Life Instruments: A Dimensionality Assessment Using Factor Analysis

“…This study is part of the wider Quality of Life in Kids: Key Evidence for Decision Makers in Australia (QUOKKA) research programme in Australia. A detailed summary of the P-MIC data collection is available from Jones et al [ 20 , 21 ]. This study focused on 5- to 18-year-olds in the sample, as the instruments for use in children aged 2–4 years of age are experimental.…”

A Comparison of the Psychometric Properties of the EQ-5D-Y-3L and EQ-5D-Y-5L Using Paediatric Multi-Instrument Comparison (P-MIC) Study Data

“…The assessment of validity did not include convergence and divergence, which are presented in a separate papers [30,31].…”

“…Interpretation of agreement using kappa coefficients was prespecified as follows: kappa < 0.2 indicates poor agreement, 0.21-0.40 indicates fair agreement, 0.41-0.60 indicates moderate agreement, 0.61-0.80 indicates substantial agreement, and kappa > 0.81 indicates almost perfect agreement [34]. Test-retest analysis on a domain basis has been published elsewhere [30].…”

“…The proportion of stated problems on the Y-3L and Y-5L are reported in Table 1. More details regarding respondent characteristics, including by age and condition, can be found in the papers by Jones et al [20,30,35].…”

Meeting the Challenges of Preference-Weighted Health-Related Quality-of-Life Measurement in Children

“…In a study comparing the psychometric performance of PedsQL, EQ-5D-Y-3L, EQ-5D-Y-5L, Child Health Utility 9D (CHU9D), AQoL-6D, and Health Utilities Index (HUI)3 stratified by child age, report type, and child health status, Jones et al found all instruments demonstrated known group, convergent, and divergent validity and the EQ-5D-Y-3L demonstrated ceiling effects [ 13 ]. Among the preference-weighted HRQoL instruments, the EQ-5D-Y-3L, EQ-5D-Y-5L, and CHU9D demonstrated acceptable test-retest reliability and responsiveness to improved or worsening health.…”