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. 2025 Sep;43(9):1065-1082.
doi: 10.1007/s40273-025-01509-9. Epub 2025 Jun 28.

The Psychometric Performance of Generic Preference-Based Measures in Informal Carers: A Systematic Review of Validation Studies

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The Psychometric Performance of Generic Preference-Based Measures in Informal Carers: A Systematic Review of Validation Studies

Jan Faller et al. Pharmacoeconomics. 2025 Sep.

Abstract

Background and objective: A growing number of health technology assessment agencies recommend inclusion of informal carer outcomes in health economic evaluations. While generic preference-based measures (GPBMs) are favoured, the evidence regarding their performance in measuring the health-related quality of life of informal carers has not been synthesised. The aim of this systematic review was to synthesise the psychometric evidence of GPBMs in informal carers.

Methods: Following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, a literature search (indexed through October 2024) was conducted in CINAHL, PsycInfo, Embase and MEDLINE databases, supplemented with forward and backward citation searches. Publications were included that reported the psychometric performance of GPBMs in informal carers, regardless of care recipients' condition. Narrative synthesis was used to summarise the evidence. Quality of studies was evaluated using the COSMIN risk of bias checklist. International Prospective Register of Systematic Reviews (PROSPERO) registration is CRD42023434651.

Results: Twenty-one studies (published between 2001 and 2024) were identified, with nine evaluating multiple GPBMs (head-to-head comparisons). The EQ-5D 3-level (EQ-5D-3L) [n = 9] and EQ-5D 5-level (EQ-5D-5L) [n = 7] were the most frequently evaluated, followed by the Short-form 6-Dimension version 1 (SF-6Dv1) [n = 4], EuroQol Health and Wellbeing Short Form (EQ-HWB-9) [n = 4], Health Utilities Index (HUI) marks 2/3 (n = 3), Health-related Quality of Life Instrument with 8 Items (HINT-8) [n = 1] and Quality of Well Being Self-Administered (QWB-SA) [n = 1]. Studies were conducted in the USA (n = 6), UK (n = 4), China (n = 4), Australia (n = 3), Italy (n = 1), Iran (n = 1) and South Korea (n = 1), including a multi-country study (UK, Germany and France) study (n = 1). Care recipient conditions included carers of unspecified conditions, adults using long-term care, Alzheimer's disease or dementia, autism, cancer, leukaemia, craniofacial malformations, meningitis and multiple sclerosis. The EQ-5D-3L and EQ-5D-5L had evidence of ceiling effects at the index level. The EQ-5D-3L, EQ-5D-5L and EQ-HWB-9 demonstrated at least 'good' (intraclass correlation coefficient > 0.60) test-retest reliability. Known-group validity evidence was available for the EQ-5D-3L, EQ-5D-5L, EQ-HWB-9, HUI3 and SF-6Dv1 where each GPBM was able to discriminate over 60% of the groups (known or exploratory). Convergent validity studies reported that the EQ-5D-3L, EQ-5D-5L, EQ-HWB-9, HUI3, SF-6Dv1 and QWB-SA had moderate correlations with at least one care-specific preference-based measure (Adult Social Care Outcomes Toolkit for Carers [ASCOT-Carer], Care-Related Quality of Life [CarerQol] and Carer Experience Scale [CES]). Responsiveness was evaluated for the EQ-5D-5L, EQ-HWB-9 and SF-6Dv1 where mixed evidence was reported for the two EuroQol instruments, whereas the SF-6Dv1 was not found to be responsive. The studies identified were generally of adequate quality.

Conclusions: Current literature supports the use of GPBMs for informal carers; however, evidence on individual psychometric indicators is still limited. Further research is still needed, preferably involving head-to-head comparison and content validity studies in carers of people with various conditions and across countries that utilise cost-effectiveness evidence in resource allocation decisions, ideally employing longitudinal study designs.

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Conflict of interest statement

Declarations. Funding: Open Access funding enabled and organized by CAUL and its Member Institutions. Jan Faller and this work is supported by an Australian Government Research Training Program (RTP) Scholarship and the EuroQol Foundation (1481-PHD) through a grant awarded to Lidia Engel. Conflicts of Interest: Jan Faller, Valeriia Sokolova, Yared Belete Belay, Brendan Mulhern and Lidia Engel have received previous or current funding from the EuroQol Research Foundation, who is the developer and copyright holder of the EQ-5D and EQ-HWB-9 instruments included in this study. Lidia Engel and Brendan Mulhern are members of the EuroQol Group, developers of the EQ-5D and the EQ-HWB-9. Gang Chen and Cathrine Mihalopoulos have no conflicts of interest that are directly relevant to the content of this article. Views expressed in this paper are those of the authors and are not necessarily those of the EuroQol Research Foundation. Review Registration: The current review was registered with the International Prospective Register of Systematic Reviews (PROSPERO) under registration number CRD42023434651. The protocol was amended broadening the scope of the review to include other GPBMs. Consent to Participate: Not applicable. Consent for Publication: Not applicable. Availability of Data and Material: All data and materials are available within the article and supplementary resources. Further information may be available by request to the corresponding author. Code Availability: Not applicable. Authors’ Contributions: Jan Faller and Lidia Engel designed the study and wrote the protocol. Lidia Engel acquired funding. Jan Faller performed the literature search. Jan Faller, Valeriia Sokolova, Yared Belete Belay and Lidia Engel contributed to article screening, extraction and quality assessment. All authors contributed to the interpretation of the data. Jan Faller and Lidia Engel produced the first draft of the manuscript. All authors read, edited and approved the final version of the manuscript.

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