Measuring the outcomes of long-term care for unpaid carers: comparing the ASCOT-Carer, Carer Experience Scale and EQ-5D-3 L

Abstract

BackgroundThe ASCOT-Carer and Carer Experience Scale are instruments designed to capture aspects of quality of life ‘beyond health’ for family carers. The aim of this study was to compare and validate these two carer care-related measures, with a secondary aim to compare both instruments to the three-level EQ-5D (EQ-5D-3 L) measure of health-related quality of life.MethodsAn interview survey was conducted with 387 carers of adults who used long-term care (also known as social care) support in England. Construct validity by hypothesis testing was assessed using Pearson correlation coefficient. Exploratory factor analysis was also applied to investigate the dimensionality of the combined items from the ASCOT-Carer and CES (as measures of carer quality of life ‘beyond health’) and the EQ-5D (as a measure of health-related quality of life).ResultsIn the construct validity analysis, hypothesised differences in correlations were observed with two exceptions. The exploratory factor analysis indicated that the ASCOT-Carer, CES and EQ-5D-3 L items loaded onto three separate factors. The first factor comprised the seven ASCOT-Carer items plus two CES items (activities outside caring, support from friends and family). The second factor comprised three of the six CES items (fulfilment from caring, control over caring and getting on with the person you care for). The third factor included four of the five EQ-5D-3 L items.ConclusionThe findings indicate that the ASCOT-Carer, CES and EQ-5D-3 L capture separate constructs of social care-related quality of life (ASCOT-Carer) and carer experience (CES), which partially overlap in relation to activities outside caring and social support, and health-related quality of life (EQ-5D-3 L). The ASCOT-Carer and CES are both promising measures for the evaluation of social care support for carers that capture aspects of quality of life ‘beyond health’. The choice of whether to use the ASCOT-Carer or CES depends on the study objectives.

Measuring Carer Outcomes in an Economic Evaluation: A Content Comparison of the Adult Social Care Outcomes Toolkit for Carers, Carer Experience Scale, and Care-Related Quality of Life Using Exploratory Factor Analysis

“…This raises some important considerations around the use of the ASCOT-Carer alongside other generic preference-based health-related quality-of-life measures. Although in a previous study, the ASCOT-Carer showed little overlap with the EQ-5D-3L, 17 some degree of overlap is expected with broader measures of quality of life, such as the ICEpop CAPability measure for Adults or Older Adults, [33][34][35] that requires further investigation. The inclusion of physical and mental health in the CarerQol also creates some challenges around the use of the CarerQol alongside generic measures of health because of the potential risk of double counting.…”

“…While previous studies have examined only 1 or 2 of the 3 carer-related preference-based measures within the same study, 14,17 a strength of our study is the exploration of all 3 measures, offering further guidance on the use of the measures in future economic evaluation studies. The inclusion of carers in the online survey, regardless of their age or the condition(s) of the care recipient, represents another strength of our study, making the findings more generalizable to all carers providing informal care.…”

“…Only recently, the ASCOT-Carer has been compared with the CES in carers in England, indicating that they capture separate constructs of SCRQoL and carer experience, with the only overlap observed in relation to activities outside caring and social support. 17 However, to our knowledge, no previous study has examined all 3 measures using empirical analysis, such as exploratory factor analysis. Therefore, the aim of this study was to compare the content of these 3 measures and investigate the conceptual (domain) overlap across the ASCOT-Carer, CES, and CarerQol using exploratory factor analysis to guide further the selection of carer-related preference-based measures for use in economic evaluation.…”

Head-to-Head Comparison of the Psychometric Properties of 3 Carer-Related Preference-Based Instruments

“…The ASCOT-Carer measures social-care related QoL (SCRQoL) and has emerging evidence of construct validity and feasibility. 20,24 In the United Kingdom, social care refers to community-based services such as home care and day centers, and residential or nursing care. English preference weights have been recently calculated.…”

Assessing the Structural Characteristics of the Japanese Version of the Adult Social Care Outcomes Toolkit for Carers

“…7 Informal family caregivers of adults with stroke experience psychological distress and physical burden. 8,9 Therefore, psychological counseling and education for caring skills are provided to those caregivers for the maintenance of their health. 10 An epidemiological study in Japan found that regardless of the degree and type of functional limitation of LTC recipients, their spouses as informal family caregivers experienced a significantly high risk of psychological distress as well as limitations in social participation.…”