Carer Social Care-Related Quality of Life Outcomes: Estimating English Preference Weights for the Adult Social Care Outcomes Toolkit for Carers

Batchelder, Laurie; Malley, Juliette; Burge, Peter; Lu, Hui; Saloniki, Eirini-Christina; Linnosmaa, Ismo; Trukeschitz, Birgit; Forder, Julien E.

doi:10.1016/j.jval.2019.07.014

Cited by 23 publications

(38 citation statements)

References 40 publications

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“…In this paper, we consider only current social care-related quality of life. An index score of zero (worst possible SCRQoL) to one (best possible SCRQoL) is calculated by the sum of preference-weights for each selected outcome level, which were developed through best-worst scaling with a general population sample in England [40].…”

Section: Methodsmentioning

confidence: 99%

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

Rand

Malley

Vadean

et al. 2019

Health Qual Life Outcomes

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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.

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Section: Methodsmentioning

confidence: 99%

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

Rand

Malley

Vadean

et al. 2019

Health Qual Life Outcomes

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“…Values were rescaled on a 0 to 1 scale, such that high needs were given a value of 0, reflecting a measure of unmet needs. 24…”

Section: Instrumentsmentioning

confidence: 99%

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

et al. 2020

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Background. To incorporate the spillover effects experienced by carers providing informal care in health policy decisions, new carer-related preference-based measures have been developed for use in economic evaluation, which include the Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer), Carer Experience Scale (CES), and Care-Related Quality of Life (CarerQoL). The aim of this study was to investigate the extent to which these 3 instruments measure complementary or overlapping constructs. Methods. Data were derived from an online survey undertaken with carers residing in Australia. An exploratory factor analysis was conducted to ascertain the underlying latent constructs of the 3 measures. Results. Data from 351 informal carers yielded a 5-factor model describing general quality of life outside caring, problems due to caring, fulfilment from caring, social support with caring, and relationship with the care recipient. Most of the ASCOT-Carer and the CarerQol items loaded onto the first and second factors, respectively. The greatest overlap was observed between CarerQol and CES items loading onto the other 3 shared common factors. Limitations. Online data collection resulted in inconsistent responses, which had to be removed to yield logical data. A convenience sampling approach may have compromised the generalizability of study findings. Conclusion. Although some overlap was observed, the 3 carer-related preference-based measures seem to tap into different constructs of carer-related quality of life and caring experiences and cannot be used interchangeably.

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“…Preference weights for this instrument are currently in development and should be available soon. 74 In the meantime, the ASCOT-Carer can be presented as a summed score, ranging from 0 (lowest CQoL) to 21 (highest CQoL). 45 Carer self-efficacy…”

Section: Care-related Quality Of Lifementioning

confidence: 99%

Specialist nursing support for unpaid carers of people with dementia: a mixed-methods feasibility study

Gridley

Aspinal

Parker

et al. 2019

Health Serv Deliv Res

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Background Unpaid carers are the mainstay of support for people with dementia. Admiral Nursing (AN) is the only specialist nursing service that specifically focuses on supporting such carers, but evidence of its effectiveness, costs and relationships with other health and social care services is limited. This project aimed to address this gap and explore the feasibility of a full-scale formal evaluation. Objectives To explore the relationships between characteristics of carers and people with dementia, service type and input and outcomes; to develop and test data collection methods for subsequent economic evaluation; to explore the effect of AN on outcomes and costs, compared with usual care; to explore the perceived system-wide impact of specialist support for carers of people with dementia, compared with usual care; and to implement new data collection methods in AN, which could also be used by other services, to facilitate evaluation. Design A mixed-methods study, using secondary analysis of an administrative data set, and primary (cross-sectional) quantitative and qualitative data collection. Setting Qualitative research with carers in four areas of England; a survey of carers in 32 local authority areas (16 with and 16 without AN); and qualitative interviews with professionals in four areas. Participants Thirty-five carers of people with dementia and 20 professionals were interviewed qualitatively; 346 carers completed in-scope questionnaires (46% through AN services and 54% from matched non-AN areas). Interventions Specialist nursing support for carers of people with dementia (with AN as an exemplar) compared with usual care. Main outcome measures The Adult Social Care Outcomes Toolkit for Carers; the EuroQol-5 Dimensions, five-level version; and the Caregiver Self-Efficacy for Managing Dementia Scale. Data sources Dementia UK’s AN administrative data set. Results Admiral Nurses are successfully targeting the most complex cases. They work predominantly with older carers who have the main responsibility for the person with dementia, who are heavily involved in caring activity and who may be at risk. Three outcome areas that are important to carers of people with dementia and are potentially affected by receiving support are (1) carer self-efficacy, (2) carer quality of life (3) and carer mental and physical health. The carers in the survey receiving support from AN were older, were more heavily involved in caring and had poorer outcomes than carers not in receipt of such support. When these differences were controlled for, carers supported by AN had better outcomes, although the differences did not reach statistical significance. Health and social care costs were similar in both groups. The perceived system-wide impact of services, such as AN, is not well understood by professional stakeholders. Limitations Challenges were experienced in identifying similar carers in areas with or without an AN service and in the cross-sectional nature of the work. Conclusions Specialist nursing support to carers of people with dementia may enable them to continue providing care to the end or very close to the end of the dementia journey. The outcomes for such carers may be no different from, or even slightly better than, those of similar carers without this support, although the costs to health and social care services are the same in each case. Future work Future research could investigate the impact of specialist support for carers on admission to long-term care. There is also a need for more work to encourage routine use of the selected outcome measures in dementia service delivery. Funding The National Institute for Health Research Health Services and Delivery Research programme.

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Carer Social Care-Related Quality of Life Outcomes: Estimating English Preference Weights for the Adult Social Care Outcomes Toolkit for Carers

Cited by 23 publications

References 40 publications

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

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

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

Specialist nursing support for unpaid carers of people with dementia: a mixed-methods feasibility study

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