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

Bridget Johnston*, Barbara Daveson, Charles Normand, Karen Ryann, Melinda Smith, Regina McQuillan, Irene J Higginson, Lucy E Selman, Katy Tobin

*Corresponding author for this work

Research output: Contribution to journalArticle (Academic Journal)peer-review

4 Citations (Scopus)
52 Downloads (Pure)

Abstract

ContextThere is limited evidence about which elements and characteristics of palliative care service provision improve the experiences of older people living with life-limiting illness.
ObjectivesTo evaluate older patients’ (≥65 years) preferences for elements of services and supports and to explore relationships between patient characteristics and the patterns of preferences.
MethodsA cross-sectional survey undertaken in Ireland and England using a Discrete Choice Experiment (DCE) with people accessing specialist palliative care services. A random-effects probit model was used to estimate patient preferences.
Results77 patients were interviewed, 51 participated in the DCE component of the interview (response rate= 66%). Participants prioritised 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 prioritised over quantity of life (<0.001).
ConclusionPeople 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 prioritise and evaluate.
Original languageEnglish
Pages (from-to)137-145
Number of pages9
JournalJournal of Pain and Symptom Management
Volume64
Issue number2
Early online date29 Apr 2022
DOIs
Publication statusE-pub ahead of print - 29 Apr 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

Keywords

  • Discrete choice experiment
  • Patient preferences
  • Palliative care
  • Older person

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