Connecting capabilities for health and social care decision-making across the life-course

Coast, Joanna (2019). 'Connecting capabilities for health and social care decision-making across the life-course' Paper presented at the annual conference of the HDCA 2019, London, UK.

Abstract

This panel session explores several issues on the theme of how to connect the varied capabilities that might matter to people across different parts of the life-course, into decision-making frameworks that can join together efficiency and equity objectives and that can make connections across health and social care objectives.

The ICECAP capability indices have been generated for use in economic evaluations to aid health and social care decision making. They aim to provide generic measures (in that they can be applied across different types of health and social care) but ones that explicitly concentrate on different parts of the life-course. There are currently three measures that emphasise different parts of the life-course, with the existing measures focusing on adulthood (ICECAP-A) [1], older people (ICECAP-O) [2] and end of life (ICECAP-Supportive Care Measure or ICECAP-SCM) [3]. There is a further measure, also applicable in the context of end of life, but intended for those who are close to the person who is dying: the ICECAP Close Person Measure, or ICECAP-CPM [4].

All of these measures were generated using similar methods, comprising in-depth interviews with the populations of interest (adults, older people aged 65+, people at various stages along the trajectory towards death, those recently bereaved or currently caring for someone close to them at the end of life), with interviews focusing on what aspects of life are important to people (what they have ‘reason to value’) and continuing until saturation was reached in terms of the generation of attributes. Each of the three life-course measures was then valued using best-worst scaling/discrete choice techniques; a preliminary deliberative valuation of the ICECAP-CPM has been undertaken.

There is therefore a comprehensive set of capability indices available to use in evaluation of adult health and social care interventions. There are also some clear gaps, however. The first is that there are, as yet, no child capability measures designed for use in economic evaluation studies. There are additional complexities in generating capability measures for children and young people, both conceptual and practical. The first paper in the session will therefore concentrate on the earliest parts of the life-course, across childhood. Paul Mitchell and Samantha Husbands will jointly present work focusing on the varied theoretical and applied challenges in extending the ICECAP capability family of measures to include a measure/measures that will enable evaluation of health and social care interventions in childhood and adolescence.

The second gap is around the choice of decision making objective for use with capability measures within economic evaluation. Previous conceptual work has explored the possibility of using the ICECAP measures with two alternative decision-making objectives: (i) maximising capability (akin to the standard health economic approach of maximising health); and (ii) efficiently achieving sufficient levels of capability [5]. A clear difficulty with this earlier conceptual work is knowing at what level to set a sufficient level of capability in terms of the ICECAP measures. Moving further along the life-course within this session, Philip Kinghorn advances the previous conceptual work by using deliberative methods to explore public values about appropriate levels at which to set a threshold of sufficient capability for the ICECAP-A for use in health and social care decision making in adulthood.

The third gap concerns the connections between the different measures that are appropriate at different stages of the life-course. If different measures are appropriate at different stages of the life-course, it is important to know on what basis and at what point to shift between these different measures. In the third paper in the session, Joanna Coast presents empirical work that considers this question in the context of moving from the standard health gain objective associated with organisations such as NICE (National Institute for Health and Care Excellence) in the UK, towards a capability objective associated with the opportunity for a good death. The paper also explores connections between the two ICECAP measures for end of life, ICECAP-SCM and ICECAP-CPM, and how they might be related within an overall decision-making framework for end of life care.

Overall, this session will tackle a number of difficult conceptual and empirical questions associated with generating and using capability measures, ultimately connecting the academic interest in this area with the real world of decision-making.

Keywords

Connecting capabilities; Health & social care; Decision-making; Life-course; ICECAP measures

References

1. Al-Janabi, H., T.N. Flynn, and J. Coast, Development of a self-report measure of capability wellbeing for adults: the ICECAP-A. Quality of Life Research, 2012. 21: p. 167-176.

2. Coast, J., et al., Valuing the ICECAP capability index for older people. Social Science and Medicine, 2008. 67: p. 874-882.

3. Sutton, E. and J. Coast, Development of a supportive care measure for economic evaluation of end-of-life care, using qualitative methods. Palliative Medicine, 2014. 28: p. 151-157.

4. Canaway, A., et al., Development of a measure (ICECAP-Close Person Measure) through qualitative methods to capture the benefits of end-of-life care to those close to the dying for economic evaluation. Palliative Medicine, 2017. 31(1): p. 53-62.

5. Mitchell, P., et al., Assessing sufficient capability: A new approach to economic evaluation. Social Science & Medicine, 2015. 139: p. 71-79.

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