Title: Techniques to include carers' quality of life in economic evaluation
Funder: Department of Health and Social Care

Abstract: Background: There are currently 6.5 million family carers in the UK. Although carers are vital in supporting the health system, many suffer health, financial and social problems as a result of their caring. Ensuring healthcare provision better meets the needs of carers as well as patients would help to maintain, and potentially improve, carers' quality of life. However carers are largely ignored in the economic evaluations that inform healthcare provision. In part this is due to gaps in our understanding about when carer data should be collected, how carer quality of life should be measured, and how it should be valued within an economic evaluation. Research aims: This research will develop techniques to include carer quality of life impacts directly in economic evaluation, by addressing gaps in our understanding from primary data collection through to the conduct of economic evaluation. The specific objectives are to: identify the types of healthcare interventions likely to impact on carers' quality of life; test the appropriateness of carer quality of life measures; estimate values for carer quality of life data to enable it to be incorporated in economic evaluation; apply these values in an existing economic evaluation. Plan of investigation: The research will focus on carers associated with three major conditions: dementia, stroke and mental illness. These represent high prevalence conditions, associated with diverse and often substantial impacts on carers' lives. The objective is to build a technique using these conditions that could potentially be generalised across healthcare. In work package 1, I will conduct a Delphi study with carers, care professionals and key researchers. This will tell us what sort of healthcare interventions are most likely to impact on carer quality of life. This information will be useful for deciding when, in practice, trials and evaluations should collect primary data on carer quality of life. In work package 2, I will include two generic carer quality of life measures (the Carer Experience Scale and CarerQoL) in a prospective study of carers' quality of life and follow this up with cognitive interviews with a sub-sample of carers. This will indicate which measures are valid, responsive and acceptable in the context of dementia, stroke and mental illness. In work package 3, I will use three different techniques to estimate the value of carer quality of life. This will provide interim empirical estimates to allow carer quality of life to be simultaneously considered alongside patient quality of life in an economic evaluation. In work package 4, I will apply these values to re-evaluate an existing economic evaluation of GP management of multi-morbidity, taking into account impacts on carers' quality of life. Summary of benefits to patients and the NHS: The project will enable economic evaluation, and hence service provision, to reflect what is valued by carers as well as patients. As a result, the research should contribute to a better evidence base for policy-making in healthcare. Ultimately, if healthcare provision better reflects carer outcomes, the research has the potential to improve the quality of life of carers. In the longer term this should enable carers to sustain care in the home for longer, which would lead to patient benefit, as well as potentially freeing up healthcare resources for other uses.

Lay abstract: Background: There are currently 6.5 million family carers in the UK. Carers are vital in supporting patients and the wider health service but many suffer health, financial, and relationship problems as a result of their caring. Carers' needs are very rarely considered when deciding about healthcare interventions (such as new drugs, care services or organisational changes). For example, the closure of mental health beds might save the state money and may benefit some service users, but it also may put carers under strain. Without routinely considering carers in these important decisions, policy-makers are unable to balance the needs of all in society. Aims: In this research, I will develop methods to include carers in policy decisions. My aims are to identify: Health treatments and policies that are likely to impact on carers' lives; How best to measure carer quality of life; The social value of improving carer quality of life; How carer quality of life can be included in policy- decisions. Design and methods: I will work with carers in dementia, stroke and mental health. The work will be conducted in projects that match the four research aims. Project 1 is an online survey of carers, care professionals and key researchers. Survey participants will identify how different types of intervention are likely to affect the quality of life of carers. I will use this information to establish which interventions may have positive or negative impacts on carer quality of life. I will also provide recommendations as to when data on carers should be collected in medical research studies. Project 2 will involve carers filling in short quality of life measures in a postal survey. I will also interview some carers and ask them to think-aloud' as they complete the questionnaires. This project will tell us which measure best captures carers' quality of life. Project 3 will involve studying the social values of carers and members of the general public. This will allow me to quantify the importance of carer quality of life. I will pilot different techniques and use the most appropriate ones to estimate values. These values can be used by other researchers to enable economic evaluations (value-for-money judgements that inform national policy decisions) to consider carers. Project 4 will reanalyse cost and outcome data from an existing study. This study examines whether a new way of treating people with multiple health problems is cost-effective. By re-analysing the data I will show how carers can be included in a real-life economic evaluation. I will demonstrate what impact including carers has on the recommendation about the most cost-effective treatment approach. Patient and public involvement: A number of carers have helped develop the plan for this research proposal. A lived experience' panel including six carers will support the research project. These carers will meet with me at key points during the study. The panel will assist in recruiting participants, drawing-up study documentation, interpreting the research findings, and dissemination. Summary of benefits to patients and the NHS: The project will provide methods so that health policy-makers can better balance the needs of patients and carers. Pursuing policies that prioritise carers has the potential to improve the quality of life of carers. This may enable carers to sustain care in the home for longer. In turn this would lead to patient benefit and more healthcare resources for other uses. Dissemination: I will be supported in disseminating the findings by an advisory group comprising carers, charity representatives, policy-makers and key academics. In addition to publishing the findings in journals and presenting at conferences, I will give talks to key decision-makers (such as the National Institute of Health and Care Excellence (NICE))) and charities. I will also write articles for charity newsletters, develop an online project web-page, and organise a workshop on carers and healthcare to bring together key people in the field.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;8.2 HEALTH AND WELFARE ECONOMICS
Health categories: GENERIC HEALTH RELEVANCE