Joanna Coast1, Cara Bailey2, Rosanna Orlando3, Kathy Armour4, Rachel Perry4, Louise Jones5, Philip Kinghorn6. 1. Health Economics at Bristol, Population Health Sciences, Bristol Medical School, University of Bristol, Canynge Hall, 39 Whatley Road, Bristol, BS8 2PS, UK. jo.coast@bristol.ac.uk. 2. School of Nursing, Institute of Clinical Sciences, University of Birmingham, Birmingham, UK. 3. CLAHRC Wessex, Health Sciences, University of Southampton, Southampton, UK. 4. Marie Curie Hospice West Midlands, Solihull, UK. 5. Marie Curie Palliative Care Research Department, UCL, London, UK. 6. Health Economics Unit, Institute of Applied Health Research, University of Birmingham, Birmingham, UK.
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.
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.
Authors: Paula K Lorgelly; Karen Lorimer; Elisabeth A L Fenwick; Andrew H Briggs; Paul Anand Journal: Soc Sci Med Date: 2015-08-06 Impact factor: 4.634
Authors: Joanna Coast; Terry N Flynn; Lucy Natarajan; Kerry Sproston; Jane Lewis; Jordan J Louviere; Tim J Peters Journal: Soc Sci Med Date: 2008-06-21 Impact factor: 4.634
Authors: Terry N Flynn; Elisabeth Huynh; Tim J Peters; Hareth Al-Janabi; Sam Clemens; Alison Moody; Joanna Coast Journal: Health Econ Date: 2013-11-20 Impact factor: 3.046
Authors: Richard Sawatzky; Jae-Yung Kwon; Ruth Barclay; Cynthia Chauhan; Lori Frank; Wilbert B van den Hout; Lene Kongsgaard Nielsen; Sandra Nolte; Mirjam A G Sprangers Journal: Qual Life Res Date: 2021-03-02 Impact factor: 4.147