Dr Hareth Al-Janabi
Techniques to include carers' quality of life in economic evaluation
Alzheimer's disease & other dementias
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.