Adaptation, Acceptance and Adaptive Preferences in Health and Capability Well-Being Measurement Amongst Those Approaching End of Life

Joanna Coast (), Cara Bailey, Rosanna Orlando, Kathy Armour, Rachel Perry, Louise Jones and Philip Kinghorn
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Joanna Coast: University of Bristol
Cara Bailey: University of Birmingham
Rosanna Orlando: CLAHRC Wessex, Health Sciences, University of Southampton
Kathy Armour: Marie Curie Hospice West Midlands
Rachel Perry: Marie Curie Hospice West Midlands
Louise Jones: UCL
Philip Kinghorn: University of Birmingham

The Patient: Patient-Centered Outcomes Research, 2018, vol. 11, issue 5, No 8, 539-546

Abstract: Abstract Background and Objectives Adaptive preferences occur when people subconsciously alter their views to account for the possibilities available to them. Adaptive preferences may be problematic where these views are used in resource allocation decisions because they may lead to underestimation of the true benefits of providing services. This research explored the nature and extent of both adaptation (changing to better suit the context) and adaptive preferences (altering preferences in response to restricted options) in individuals approaching the end of life (EoL). Methods Qualitative data from ‘thinkaloud’ interviews with 33 hospice patients, 22 close persons and 17 health professionals were used alongside their responses to three health/well-being measures for use in resource allocation decisions: EQ-5D-5L (health status); ICECAP-A (adult capability); and ICECAP-SCM (Supportive Care Measure; EoL capability). Constant comparative analysis combined a focus on both verbalised perceptions across the three groups and responses to the measures. Results Data collection took place between October 2012 and February 2014. Informants spoke clearly about how patients had adapted their lives in response to symptoms associated with their terminal condition. It was often seen as a positive choice to accept their state and adapt in this way but, at the same time, most patients were fully aware of the health and capability losses that they had faced. Self-assessments of health and capability generally appeared to reflect the pre-adaptation state, although there were exceptions. Conclusion Despite adapting to their conditions, the reference group for individuals approaching EoL largely remained a healthy, capable population, and most did not show evidence of adaptive preferences.

Date: 2018
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DOI: 10.1007/s40271-018-0310-z

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