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

Background: The 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-3L) measure of health-related quality of life. Methods: An 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). Results: In 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-3L 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-3L items. Conclusion: The findings indicate that the ASCOT-Carer, CES and EQ-5D-3L 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-3L). 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

Content validation of the Well-being of Older People measure (WOOP)

Background: Valid measures of the well-being of older people are important for the evaluation of health and social care services. The nine-item Well-being of Older People measure (WOOP) was based on a novel framework derived from a recent Q-methodology study, and was developed to capture a comprehensive set of well-being domains relevant to older people, as identified by themselves. This study introduces the WOOP and describes the qualitative assessment of its feasibility and content validity. Methods: Between December 2017 and January 2018, a sampling agency retrieved data from 269 adults aged 65 years and older in the Netherlands. Using an online survey, participants were asked to complete the WOOP and to indicate the importance of each item to their well-being. Open-ended questions were used to collect information about participants’ own definition of well-being, their interpretation of the items of the WOOP, and their assessment of the descriptions and response options provided with each item. Data were analysed using inductive content analysis with the software package ATLAS.ti. Results: The WOOP closely resembled respondents’ own description of what well-being means to them. The majority of the respondents reported no important well-being aspects to be missing from the WOOP, and indicated all WOOP items to be at least ‘reasonably important’ to their well-being. Many linked the WOOP items to well-being aspects as intended, and only a few had suggestions for improving the items’ descriptions and response options. Conclusions: Given these results, all nine items were retained, and no items were added to the measure. Based on respondents’ feedback, minor changes were made to the wording of some descriptions and response options of items. Concluding, the feasibility and content validity of the WOOP seem satisfactory. Further validation of this new measure is required, in different health and social care settings and among subgroups of older people with potentially different views on what constitutes well-being.</p