IDEAS home Printed from https://ideas.repec.org/a/spr/patien/v17y2024i1d10.1007_s40271-023-00651-w.html
   My bibliography  Save this article

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
    as

    Download full text from publisher

    File URL: http://link.springer.com/10.1007/s40271-023-00651-w
    File Function: Abstract
    Download Restriction: Access to the full text of the articles in this series is restricted.
    File URL: https://libkey.io/10.1007/s40271-023-00651-w?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    As the access to this document is restricted, you may want to search for a different version of it.

    References listed on IDEAS

    as
    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.
    Full references (including those not matched with items on IDEAS)

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Himmler, Sebastian & Jonker, Marcel & van Krugten, Frédérique & Hackert, Mariska & van Exel, Job & Brouwer, Werner, 2022. "Estimating an anchored utility tariff for the well-being of older people measure (WOOP) for the Netherlands," Social Science & Medicine, Elsevier, vol. 301(C).
    2. Kinghorn, Philip, 2019. "Using deliberative methods to establish a sufficient state of capability well-being for use in decision-making in the contexts of public health and social care," Social Science & Medicine, Elsevier, vol. 240(C).
    3. Joanna Coast & Hareth Al‐Janabi & Eileen J. Sutton & Susan A. Horrocks & A. Jane Vosper & Dawn R. Swancutt & Terry N. Flynn, 2012. "Using qualitative methods for attribute development for discrete choice experiments: issues and recommendations," Health Economics, John Wiley & Sons, Ltd., vol. 21(6), pages 730-741, June.
    4. Daphne C. Voormolen & Judith A. M. Bom & Esther W. Bekker-Grob & Werner B. F. Brouwer & Job Exel, 2024. "Development and Content Validation of the 10-item Well-being Instrument (WiX) for use in Economic Evaluation Studies," Applied Research in Quality of Life, Springer;International Society for Quality-of-Life Studies, vol. 19(2), pages 381-413, April.
    5. Hareth Al-Janabi & Terry N. Flynn & Joanna Coast, 2011. "Estimation of a Preference-Based Carer Experience Scale," Medical Decision Making, , vol. 31(3), pages 458-468, May.
    6. Chen, Gang & Ratcliffe, Julie & Milte, Rachel & Khadka, Jyoti & Kaambwa, Billingsley, 2021. "Quality of care experience in aged care: An Australia-Wide discrete choice experiment to elicit preference weights," Social Science & Medicine, Elsevier, vol. 289(C).
    7. Kathryn Hale & Truls Østbye & Bilesha Perera & Robert Bradley & Joanna Maselko, 2019. "A Novel Adaptation of the HOME Inventory for Elders: The Importance of the Home Environment Across the Life Course," IJERPH, MDPI, vol. 16(16), pages 1-21, August.
    8. Rowen, Donna & Mukuria, Clara & Bray, Nathan & Carlton, Jill & Longworth, Louise & Meads, David & O'Neill, Ciaran & Shah, Koonal & Yang, Yaling, 2022. "Assessing the comparative feasibility, acceptability and equivalence of videoconference interviews and face-to-face interviews using the time trade-off technique," Social Science & Medicine, Elsevier, vol. 309(C).
    9. Coast, Joanna, 2018. "A history that goes hand in hand: Reflections on the development of health economics and the role played by Social Science & Medicine, 1967–2017," Social Science & Medicine, Elsevier, vol. 196(C), pages 227-232.
    10. Olsen, Jan Abel & Lindberg, Marie Hella & Lamu, Admassu Nadew, 2020. "Health and wellbeing in Norway: Population norms and the social gradient," Social Science & Medicine, Elsevier, vol. 259(C).
    11. 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.
    12. Brendan Mulhern & Richard Norman & John Brazier, 2021. "Valuing SF-6Dv2 in Australia Using an International Protocol," PharmacoEconomics, Springer, vol. 39(10), pages 1151-1162, October.
    13. Nadezhda Golovchanova & Katja Boersma & Henrik Andershed & Karin Hellfeldt, 2021. "Affective Fear of Crime and Its Association with Depressive Feelings and Life Satisfaction in Advanced Age: Cognitive Emotion Regulation as a Moderator?," IJERPH, MDPI, vol. 18(9), pages 1-15, April.
    14. Sachie Mizohata & Raynald Jadoul, 2013. "Towards International and Interdisciplinary Research Collaboration for the Measurements of Quality of Life," Social Indicators Research: An International and Interdisciplinary Journal for Quality-of-Life Measurement, Springer, vol. 111(3), pages 683-708, May.
    15. Hareth Al‐Janabi, 2018. "Do capability and functioning differ? A study of U.K. survey responses," Health Economics, John Wiley & Sons, Ltd., vol. 27(3), pages 465-479, March.
    16. Guillem López-Casasnovas & José Luis Pinto Prades, 2022. "QALY Maximization and the Social Optimum," Hacienda Pública Española / Review of Public Economics, IEF, vol. 242(3), pages 111-127, September.
    17. Yasmeen Razvi & Simonne L Horwitz & Celine Cressman & Daniel E Wang & Randi Zlotnik Shaul & Avram Denburg, 2024. "Priority-setting for hospital funding of high-cost innovative drugs and therapeutics: A qualitative institutional case study," PLOS ONE, Public Library of Science, vol. 19(3), pages 1-19, March.
    18. Engel, Lidia & Bryan, Stirling & Noonan, Vanessa K. & Whitehurst, David G.T., 2018. "Using path analysis to investigate the relationships between standardized instruments that measure health-related quality of life, capability wellbeing and subjective wellbeing: An application in the ," Social Science & Medicine, Elsevier, vol. 213(C), pages 154-164.
    19. Tianxin Pan & Brendan Mulhern & Rosalie Viney & Richard Norman & Janel Hanmer & Nancy Devlin, 2022. "A Comparison of PROPr and EQ-5D-5L Value Sets," PharmacoEconomics, Springer, vol. 40(3), pages 297-307, March.
    20. Mitchell, Paul Mark & Roberts, Tracy E. & Barton, Pelham M. & Coast, Joanna, 2015. "Assessing sufficient capability: A new approach to economic evaluation," Social Science & Medicine, Elsevier, vol. 139(C), pages 71-79.

    More about this item

    Statistics

    Access and download statistics

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:spr:patien:v:17:y:2024:i:1:d:10.1007_s40271-023-00651-w. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: Sonal Shukla or Springer Nature Abstracting and Indexing (email available below). General contact details of provider: http://www.springer.com .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.