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

Author

Listed:
  • 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)

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.

Suggested Citation

  • Joanna Coast & Cara Bailey & Rosanna Orlando & Kathy Armour & Rachel Perry & Louise Jones & Philip Kinghorn, 2018. "Adaptation, Acceptance and Adaptive Preferences in Health and Capability Well-Being Measurement Amongst Those Approaching End of Life," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 11(5), pages 539-546, October.
    • Handle: RePEc:spr:patien:v:11:y:2018:i:5:d:10.1007_s40271-018-0310-z
    DOI: 10.1007/s40271-018-0310-z
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    References listed on IDEAS

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    1. Amartya Sen, 2004. "Capabilities, Lists, And Public Reason: Continuing The Conversation," Feminist Economics, Taylor & Francis Journals, vol. 10(3), pages 77-80.
    2. Greco, Giulia & Skordis-Worrall, Jolene & Mkandawire, Bryan & Mills, Anne, 2015. "What is a good life? Selecting capabilities to assess women's quality of life in rural Malawi," Social Science & Medicine, Elsevier, vol. 130(C), pages 69-78.
    3. Terry N. Flynn & Elisabeth Huynh & Tim J. Peters & Hareth Al‐Janabi & Sam Clemens & Alison Moody & Joanna Coast, 2015. "Scoring the Icecap‐a Capability Instrument. Estimation of a UK General Population Tariff," Health Economics, John Wiley & Sons, Ltd., vol. 24(3), pages 258-269, March.
    4. Martha Nussbaum, 2003. "Capabilities As Fundamental Entitlements: Sen And Social Justice," Feminist Economics, Taylor & Francis Journals, vol. 9(2-3), pages 33-59.
    5. Huynh, Elisabeth & Coast, Joanna & Rose, John & Kinghorn, Philip & Flynn, Terry, 2017. "Values for the ICECAP-Supportive Care Measure (ICECAP-SCM) for use in economic evaluation at end of life," Social Science & Medicine, Elsevier, vol. 189(C), pages 114-128.
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    Cited by:

    1. Lina Rosengren & Anna Forsberg & Christina Brogårdh & Jan Lexell, 2021. "Life Satisfaction and Adaptation in Persons with Parkinson’s Disease—A Qualitative Study," IJERPH, MDPI, vol. 18(6), pages 1-12, March.
    2. Paul Mark Mitchell & Samantha Husbands & Sarah Byford & Philip Kinghorn & Cara Bailey & Tim J. Peters & Joanna Coast, 2021. "Challenges in developing capability measures for children and young people for use in the economic evaluation of health and care interventions," Health Economics, John Wiley & Sons, Ltd., vol. 30(9), pages 1990-2003, September.

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