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Research project: Developing a utility index for End of Life care

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One challenge in End of Life care research is assessing outcome. The ‘QALY' (quality-adjusted life year) measure is an unsuitable tool. The aim of this research is to develop a framework and ‘fit for purpose' specific utility measure.

At a time of growing economic challenge End of Life (EoL) care must look at providing and investing in services in the most effective and efficient ways. To build such an evidence base which can inform these decisions requires an appropriate utility-based EoL care outcome measure. To date there is growing acceptance that the standard generic preference-based health outcome measure, the ‘QALY' (quality-adjusted life year) is unsuitable for evaluating End of Life care options. Yet at the same time there is lack of development of a ‘fit-for-purpose' outcome measure.  This work takes forward the thinking behind a research and development plan for a programme-specific EoL care utility index.

The research plan has three phases: development of an EoL care focused descriptive system, a prospective valuation survey (using a discrete choice experiment survey) and estimation of a model to interpolate EoL care indices.  The descriptive system will be based on the findings from a systematic review of preference and non-preference based outcome measures. The valuation method is discrete choice analysis to overcome some of the shortcomings identified in other approaches. There is growing acknowledgement in the health economics community that this is more cognitively intuitive for respondents than, say, the often used Time Trade Off method.  With careful application it produces values on a ‘0' (worst) to ‘1' (best) utility scale.  What is less clear in the field of EoL care is whose values to count; patients, carers, members of the public, decision-makers? Little is known about the similarity/difference between them and is an issue empirically explored in the current work.

This project is undertaken as part of Dr Gerard's Fellowship on Developing stated preference discrete choice experiments for improving the redesign of patient-led health services.

Project team

Dr Karen Gerard, Reader in Health Economics, NIHR Career Development Fellow Professor Julia Addington-Hall, Dr Timothy Bolt

Project funder

National Institute of Health Research Career Development Award

Associated research themes

Service access, organisation and delivery

Related research groups

Complex Healthcare Processes
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