Systematic Review of the Psychometric Performance of Generic Childhood Multi-attribute Utility Instruments

Abstract

Background Childhood multi-attribute utility instruments (MAUIs) can be used to measure health utilities in children (aged ≤ 18 years) for economic evaluation. Systematic review methods can generate a psychometric evidence base that informs their selection for application. Previous reviews focused on limited sets of MAUIs and psychometric properties, and only on evidence from studies that directly aimed to conduct psychometric assessments. Objective This study aimed to conduct a systematic review of psychometric evidence for generic childhood MAUIs and to meet three objectives: (1) create a comprehensive catalogue of evaluated psychometric evidence; (2) identify psychometric evidence gaps; and (3) summarise the psychometric assessment methods and performance by property. Methods A review protocol was registered with the Prospective Register of Systematic Reviews (PROSPERO; CRD42021295959); reporting followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) 2020 guideline. The searches covered seven academic databases, and included studies that provided psychometric evidence for one or more of the following generic childhood MAUIs designed to be accompanied by a preference-based value set (any language version): 16D, 17D, AHUM, AQoL-6D, CH-6D, CHSCS-PS, CHU9D, EQ-5D-Y-3L, EQ-5D-Y-5L, HUI2, HUI3, IQI, QWB, and TANDI; used data derived from general and/or clinical childhood populations and from children and/or proxy respondents; and were published in English. The review included ‘direct studies’ that aimed to assess psychometric properties and ‘indirect studies’ that generated psychometric evidence without this explicit aim. Eighteen properties were evaluated using a four-part criteria rating developed from established standards in the literature. Data syntheses identified psychometric evidence gaps and summarised the psychometric assessment methods/results by property. Results Overall, 372 studies were included, generating a catalogue of 2153 criteria rating outputs across 14 instruments covering all properties except predictive validity. The number of outputs varied markedly by instrument and property, ranging from 1 for IQI to 623 for HUI3, and from zero for predictive validity to 500 for known-group validity. The more recently developed instruments targeting preschool children (CHSCS-PS, IQI, TANDI) have greater evidence gaps (lack of any evidence) than longer established instruments such as EQ-5D-Y, HUI2/3, and CHU9D. The gaps were prominent for reliability (test–retest, inter-proxy-rater, inter-modal, internal consistency) and proxy-child agreement. The inclusion of indirect studies ( n = 209 studies; n = 900 outputs) increased the number of properties with at least one output of acceptable performance. Common methodological issues in psychometric assessment were identified, e.g., lack of reference measures to help interpre...

The RETRIEVE Checklist for Studies Reporting the Elicitation of Stated Preferences for Child Health-Related Quality of Life

“…Economic evaluation is a cornerstone of health economics and is used to inform resource allocation decisions across technologies, such as medicines, services, and tests [ 1 , 2 ]. When considering interventions targeted at children and young people, the development of health-related quality of life (HRQoL) instruments specific to the measurement of child health [ 3 , 4 ], and the valuation of child HRQoL anchored on a 0–1 scale required for estimation of quality-adjusted life-years (QALYs) [ 5 ], are key elements. There is a lack of consensus, though, about fundamental aspects of these research methods used in valuing child HRQoL [ 6 , 7 ].…”

“…There are numerous characteristics that might affect and limit the comparability of evidence on HRQoL and QALYs in children and young people. However, in a recent systematic review of measurement and valuation of child HRQoL [ 3 ], a review of the psychometric performance of generic childhood multi-attribute utility instruments [ 4 ], and a review of the methods used to value child HRQoL [ 8 ], authors concluded that the reporting of such studies is often incomplete and inconsistent. Poor reporting of methods used to value child HRQoL and the values derived makes it difficult for users of these instruments to make informed choices and for decision makers to use the evidence in an informed way.…”

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

“…An instrument’s measurement accuracy can be informed by assessment of its psychometric properties. Although there is some evidence available regarding the individual psychometric performance of generic paediatric HRQoL instruments [ 9 ], there is a paucity of evidence on the comparative psychometric performance of these instruments (i.e., how these instruments perform compared with one another in the same sample) in terms of validity, reliability, and responsiveness [ 10 , 11 ]. There are challenges measuring HRQoL in children when compared with adults, which may be why such evidence is still lacking [ 12 ].…”

“…Unlike adults, children have a broad developmental range, precluding the use of a single approach for measuring HRQoL in all children [ 13 ]. There have been five previous reviews of generic paediatric HRQoL instruments [ 9 – 11 , 14 , 15 ]. A 2015 systematic review examined HRQoL instruments accompanied by preference weights that were previously used in paediatric populations: the Adolescent Health Utility Measure, Assessment of Quality of Life (AQoL-6D), Child Health Utility (CHU9D), the EuroQol Group’s EQ-5D-Y-3L, Health Utilities Index Mark 2 (HUI2) and Mark 3 (HUI3), 16D, 17D, and the Quality of Wellbeing Scale (QWB) [ 11 ].…”

Fighting to Breathe and Fighting for Health-Related Quality of Life: Measuring the Impact of Being Dependent on Technology for Breathing on the Child and Their Caregiver

“…The EQ-5D-Y-3L is one of the most cited generic preference-weighted HRQoL measures available for young children [ 44 ]. It has however not been used to measure HRQoL in children dependent on technology for breathing and requires psychometric validation.…”