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What Aspects of Quality of Life are Important from Palliative Care Patients’ Perspectives? A Framework Analysis to Inform Preference-Based Measures for Palliative and End-of-Life Settings

Author

Listed:
  • Nikki McCaffrey

    (Deakin University)

  • Julie Ratcliffe

    (Flinders University)

  • David Currow

    (University of Wollongong)

  • Lidia Engel

    (Monash University)

  • Claire Hutchinson

    (Flinders University)

Abstract

Background and Objective Preference-based outcome measures are commonly applied in economic analyses to inform healthcare resource allocation decisions. Few preference-based outcome measures have been specifically developed for palliative and end-of-life settings. This study aimed to identify which quality-of-life domains are most important to Australians receiving specialised palliative care services to help determine if the development of a new condition-specific preference-based outcome measure is warranted. Methods In-depth face-to-face interviews were conducted with 18 participants recruited from palliative care services in South Australia. Data were analysed using a framework analysis drawing on findings from a systematic review of international qualitative studies investigating the quality-of-life preferences of patients receiving palliation (domains identified included cognitive, emotional, healthcare, personal autonomy, physical, preparatory, social, spiritual). Participants identified missing or irrelevant domains in the EQ-5D and QLU-C10D questionnaires and ranked the importance of domains. Results A priori domains were refined into cognitive, environmental, financial, independence, physical, psychological, social and spiritual. The confirmation of the eight important quality-of-life domains across multiple international studies suggests there is a relatively high degree of convergence on the perspectives of patients in different countries. Four domains derived from the interviews are not covered by the EQ-5D and QLU-C10D (cognitive, environmental, financial, spiritual), including one of the most important (spiritual). Conclusions Existing, popular, preference-based outcome measures such as the EQ-5D do not incorporate the most important, patient-valued, quality-of-life domains in the palliative and end-of-life settings. Development of a new, more relevant and comprehensive preference-based outcome measure could improve the allocation of resources to patient-valued services and have wide applicability internationally.

Suggested Citation

  • Nikki McCaffrey & Julie Ratcliffe & David Currow & Lidia Engel & Claire Hutchinson, 2024. "What Aspects of Quality of Life are Important from Palliative Care Patients’ Perspectives? A Framework Analysis to Inform Preference-Based Measures for Palliative and End-of-Life Settings," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 17(1), pages 39-52, January.
    • Handle: RePEc:spr:patien:v:17:y:2024:i:1:d:10.1007_s40271-023-00651-w
    DOI: 10.1007/s40271-023-00651-w
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    References listed on IDEAS

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    1. Drew Carter & Arlene Vogan & Hossein Haji Ali Afzali, 2016. "Governments Need Better Guidance to Maximise Value for Money: The Case of Australia’s Pharmaceutical Benefits Advisory Committee," Applied Health Economics and Health Policy, Springer, vol. 14(4), pages 401-407, August.
    2. Grewal, Ini & Lewis, Jane & Flynn, Terry & Brown, Jackie & Bond, John & Coast, Joanna, 2006. "Developing attributes for a generic quality of life measure for older people: Preferences or capabilities?," Social Science & Medicine, Elsevier, vol. 62(8), pages 1891-1901, April.
    3. Nancy J. Devlin & Koonal K. Shah & Yan Feng & Brendan Mulhern & Ben van Hout, 2018. "Valuing health‐related quality of life: An EQ‐5D‐5L value set for England," Health Economics, John Wiley & Sons, Ltd., vol. 27(1), pages 7-22, January.
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