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

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.