Setting research priorities for palliative and end-of-life care: a James Lind Alliance Priority Setting Partnership Refresh

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Abstract
Background: Palliative care supports the physical, emotional, social and spiritual needs of people with serious life-limiting illness. Future research must align with the priorities of people approaching the end of their lives, and those close to them. Aims: To undertake a refresh of the James Lind Alliance Palliative and End of Life Care Priority Setting Partnership, to identify and prioritise areas for future research. Design: The James Lind Alliance process was applied, between May 2023 and February 2025. An initial online survey collected areas for future research from participants. These were synthesised into a long list of questions and shortlisted through a second online survey. Final ranking of priorities was achieved using an adapted Nominal Group Technique within a prioritisation workshop. Participants: People living with serious life-limiting illnesses, carers, friends and family members supporting them, bereaved people, health and social care professionals, volunteers working in palliative and end-of-life care and members of the public. Results: 1032 and 626 responses were received to survey 1 and 2, respectively. 20 people with lived and professional experience attended the prioritisation workshop. An updated list of 24 priorities for palliative and end-of-life care research was produced. Conclusion: The priorities reflect the range of issues shaping end-of-life experiences and serve as a call to action for researchers and funders.
Funding Information
  • Marie Curie
  • Economic and Social Research Council
  • Motor Neurone Disease Association

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