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Adaptation, acceptance and adaptive preferences in health and capability well-being measurement amongst those approaching end of life

Adaptation, acceptance and adaptive preferences in health and capability well-being measurement amongst those approaching end of life
Adaptation, acceptance and adaptive preferences in health and capability well-being measurement amongst those approaching end of life

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.

1178-1653
1-8
Coast, Joanna
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Bailey, Cara
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Orlando, Rosanna
cc20c869-ca7f-4518-ad2d-0fa56caa3c86
Armour, Kathy
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Perry, Rachel
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Jones, Louise
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Kinghorn, Philip
728e30d2-64b0-414c-9b85-887d8d1f7563
Coast, Joanna
062a356d-95a4-46f0-af55-6f1438e8cd4d
Bailey, Cara
0ad1b812-78e5-41f7-95aa-7560d9157980
Orlando, Rosanna
cc20c869-ca7f-4518-ad2d-0fa56caa3c86
Armour, Kathy
0c8d89bf-fe49-4990-b32d-9c460e04a7e8
Perry, Rachel
15130375-8325-497d-9198-a273d4a2834e
Jones, Louise
68ce5626-a7bb-4856-93f3-77502a235d5e
Kinghorn, Philip
728e30d2-64b0-414c-9b85-887d8d1f7563

Coast, Joanna, Bailey, Cara, Orlando, Rosanna, Armour, Kathy, Perry, Rachel, Jones, Louise and Kinghorn, Philip (2018) Adaptation, acceptance and adaptive preferences in health and capability well-being measurement amongst those approaching end of life. Patient, 1-8. (doi:10.1007/s40271-018-0310-z).

Record type: Article

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.

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Accepted/In Press date: 9 May 2018
e-pub ahead of print date: 9 May 2018

Identifiers

Local EPrints ID: 421431
URI: http://eprints.soton.ac.uk/id/eprint/421431
ISSN: 1178-1653
PURE UUID: f5405659-8a03-4807-8859-bd0aaf72b3c2
ORCID for Rosanna Orlando: ORCID iD orcid.org/0000-0002-7097-5431

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Date deposited: 11 Jun 2018 16:30
Last modified: 07 Oct 2020 06:40

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