Jan Faller, Cathrine Mihalopoulos, Gang Chen, Nikki McCaffrey, Brendan Mulhern, Lidia Engel
{"title":"Are Generic Preference-Based Measures Valid for Use in Informal Carers? A Psychometric Investigation.","authors":"Jan Faller, Cathrine Mihalopoulos, Gang Chen, Nikki McCaffrey, Brendan Mulhern, Lidia Engel","doi":"10.1016/j.jval.2025.07.009","DOIUrl":null,"url":null,"abstract":"<p><strong>Objectives: </strong>Using generic preference-based measures (GPBMs) to capture informal carer health-related quality-of-life outcomes provides consistency across economic evaluations and facilitates combining patient and carer quality-adjusted life-years. This study assesses the psychometric performance of the 5-level EQ-5D (EQ-5D-5L) and Assessment of Quality of Life 8-Dimension (AQoL-8D) and how they conceptually relate to carer-related measures among Australian informal carers.</p><p><strong>Methods: </strong>This was a secondary analysis of an online survey (n = 500 informal carers) containing carer-related measures (Adult Social Care Outcomes Toolkit for Carers [ASCOT-Carer], Care-Related Quality-of-Life [CarerQol], Carer Experience Scale [CES]) and GPBMs (EQ-5D-5L and AQoL-8D). Descriptive analysis, ceiling effects, convergent and known-group validity, and test-retest reliability were assessed. Exploratory factor analysis was conducted exploring the conceptual overlap between the GPBMs and carer-related measures.</p><p><strong>Results: </strong>Completion rates for the GPBMs were above 94%, with no ceiling effects. Test-retest reliability (only available for the EQ-5D-5L) revealed good agreement (intraclass correlation = 0.825), with moderate (usual activities, pain/discomfort, and anxiety/depression) to substantial (mobility and self-care) agreement on domains. Both GPBMs were moderately correlated with carer-specific measures and discriminated groups based on hours of care, tasks, number of care recipient diagnoses, number cared for, sharing a household, and duration of care. Exploratory factor analysis identified some overlap (predominantly health-related concepts) between carer-related measures and the GPBMs.</p><p><strong>Conclusions: </strong>The EQ-5D-5L and AQoL-8D are acceptable for use in informal carers, with the choice of instrument dependent on the constructs intended to be measured. The inclusion of both GPBMs and carer-related measures during outcome assessment may still be warranted to understand carer well-being and burden.</p>","PeriodicalId":23508,"journal":{"name":"Value in Health","volume":" ","pages":""},"PeriodicalIF":6.0000,"publicationDate":"2025-07-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Value in Health","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1016/j.jval.2025.07.009","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"ECONOMICS","Score":null,"Total":0}
引用次数: 0
Abstract
Objectives: Using generic preference-based measures (GPBMs) to capture informal carer health-related quality-of-life outcomes provides consistency across economic evaluations and facilitates combining patient and carer quality-adjusted life-years. This study assesses the psychometric performance of the 5-level EQ-5D (EQ-5D-5L) and Assessment of Quality of Life 8-Dimension (AQoL-8D) and how they conceptually relate to carer-related measures among Australian informal carers.
Methods: This was a secondary analysis of an online survey (n = 500 informal carers) containing carer-related measures (Adult Social Care Outcomes Toolkit for Carers [ASCOT-Carer], Care-Related Quality-of-Life [CarerQol], Carer Experience Scale [CES]) and GPBMs (EQ-5D-5L and AQoL-8D). Descriptive analysis, ceiling effects, convergent and known-group validity, and test-retest reliability were assessed. Exploratory factor analysis was conducted exploring the conceptual overlap between the GPBMs and carer-related measures.
Results: Completion rates for the GPBMs were above 94%, with no ceiling effects. Test-retest reliability (only available for the EQ-5D-5L) revealed good agreement (intraclass correlation = 0.825), with moderate (usual activities, pain/discomfort, and anxiety/depression) to substantial (mobility and self-care) agreement on domains. Both GPBMs were moderately correlated with carer-specific measures and discriminated groups based on hours of care, tasks, number of care recipient diagnoses, number cared for, sharing a household, and duration of care. Exploratory factor analysis identified some overlap (predominantly health-related concepts) between carer-related measures and the GPBMs.
Conclusions: The EQ-5D-5L and AQoL-8D are acceptable for use in informal carers, with the choice of instrument dependent on the constructs intended to be measured. The inclusion of both GPBMs and carer-related measures during outcome assessment may still be warranted to understand carer well-being and burden.
期刊介绍：
Value in Health contains original research articles for pharmacoeconomics, health economics, and outcomes research (clinical, economic, and patient-reported outcomes/preference-based research), as well as conceptual and health policy articles that provide valuable information for health care decision-makers as well as the research community. As the official journal of ISPOR, Value in Health provides a forum for researchers, as well as health care decision-makers to translate outcomes research into health care decisions.
求助内容：
应助结果提醒方式：
京公网安备 11010802042870号
