Carer social care-related quality of life outcomes: establishing preference weights for the Adult Social Care Outcomes Toolkit for carers

OBJECTIVES: There is an increasing interest in how well informal carers are supported within their caring role. When assessing support, it is important to consider informal carer’s quality of life. The Adult Social Care Outcomes Toolkit for Carers (ASCOT-C) was developed and validated to capture the effect of social care on the quality of life (QoL) of informal carers. One objective when developing the ASCOT was that it could be preference weighted for use in economic evaluation. Currently there is no set of preference weights established for the ASCOT-C. The aim of this study was to generate a set of preference weights for the ASCOT-C.

METHODS: An online survey was developed, which included the Best-Worst Scaling task (BWS) to elicit preferences for ASCOT-C QoL states. The BWS task was based on a fractional-factorial design, consisting of 32 tasks, which were blocked into four segments. The online survey was administered to a representative sample of the general adult population in England (N = 1,000). Participants were asked to put themselves into the hypothetical state of being a carer and indicated which QoL situation they thought was the best and worst. Multinomial logistic regression was used to analyse the data.

RESULTS: Results showed that participants rated having ‘no control over their daily life’ as the worst domain level of all those presented. The second lowest rated domain level was ‘I don’t do anything I value or enjoy’ from the occupation domain. The most valued aspect by participants was the occupation domain at its highest level closely followed by the top level of control. Findings also showed that the position of the domains influenced participants’ best and worst choices.

CONCLUSIONS: This study has established a set of preference weights for the ASCOT-C. We reflect on the value of these weights for policy and practice.