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Preferences of Older People With a Life-Limiting Illness: A Discrete Choice Experiment

Research output: Contribution to journalArticlepeer-review

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Original languageEnglish
Pages (from-to)137-145
Number of pages9
JournalJournal of pain and symptom management
Volume64
Issue number2
DOIs
Accepted/In press2022
PublishedAug 2022

Bibliographical note

Funding Information: Support for unpaid caregivers was equally prioritized by participants. Interestingly, a higher value was placed on family using their free time to provide care than on families giving up work and receiving an allowance from the government. One interpretation of this finding is that participants perceived they might have a negative impact on their caregiver's work life. Given the severe economic downturn experienced across these countries throughout the study period, patient preferences may have been influenced by long-term effects on job opportunities and wage growth. Such concerns are supported by previous studies which have highlighted the financial and psychosocial impact of caregiving, particularly for women. 37 , 38 These results also highlight that outcome measures focusing on trajectories of care near the end of life might need to capture benefits derived from access to appropriate services and support for caregivers. Publisher Copyright: © 2022

King's Authors

Abstract

Context: There is limited evidence about which elements and characteristics of palliative care service provision improve the experiences of older people living with life-limiting illness. Objectives: To evaluate older patients’ (≥65 years) preferences for elements of services and supports and to explore relationships between patient characteristics and the patterns of preferences. Methods: A cross-sectional survey undertaken in Ireland and England using a Discrete Choice Experiment with people accessing specialist palliative care services. A random-effects probit model was used to estimate patient preferences. Results: Of the 77 patients were interviewed, 51 participated in the Discrete Choice Experiment component of the interview (response rate = 66%). Participants prioritized support that minimized unpaid caregiver burden (P < 0.001). They also preferred ease of access to services including out-of-hours access (P < 0.001) and free care at home (P < 0.001). Quality of life was prioritized over quantity of life (<0.001). Conclusion: People living with a life-limiting illness value care that focuses on quality of life, ensures barrier-free access to services and provides sufficient support for relatives. In the context of limited resources and growing demand for care, this study provides evidence about the service elements palliative care delivery models should prioritize and evaluate.

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