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

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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).


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.


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.


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.

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We would like to thank all those who participated in the research as well as members of the EconEndLife Advisory and Ethics Groups.


This study was funded by the European Research Council (261098 EconEndLife).

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Authors and Affiliations



JC—conceptualisation, acquisition of funding, study design, qualitative data analysis and interpretation, supervision, preparation of original draft; CB—conduct of interviews, qualitative data analysis and interpretation, review and editing of the written draft; RO—study design, conduct of interviews, review and editing of the written draft; KA—study design, management of the research activity in the hospice, review and editing of the written draft; RP—study design, recruitment of patients, review and editing of the written draft; LJ—study design, data interpretation, review and editing of the written draft; PK—conceptualisation, conduct of interviews, data interpretation, review and editing of the written draft.

Corresponding author

Correspondence to Joanna Coast.

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Conflict of Interest

Joanna Coast led the development of the ICECAP-A and the ICECAP-SCM. Cara Bailey, Rosanna Orlando, Kathy Armour, Rachel Perry, Louise Jones and Philip Kinghorn have no known conflicts of interest.

Data Availability Statement

The data that support the findings of this study are available on request from the corresponding author (JC). The data are not publicly available due to them containing information that could compromise research participant privacy/consent.

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Coast, J., Bailey, C., Orlando, R. et al. Adaptation, Acceptance and Adaptive Preferences in Health and Capability Well-Being Measurement Amongst Those Approaching End of Life. Patient 11, 539–546 (2018).

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