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Core Outcome Measures for Palliative and End-of-Life Research After Severe Stroke: Mixed-Method Delphi Study
Bruce Mason1, Kirsty Boyd1, Fergus Doubal2
1Usher Institute (B.M., K.B., S.L., S.M, G.E.M).
Stroke
|July 16, 2021
Summary
Palliative care trials in stroke need patient-centered outcomes. Shared decision-making and quality of life are key, alongside feasible and measurable results for stroke survivors and families.
Area of Science:
- Neurology
- Palliative Care
- Health Services Research
Background:
- Stroke is a leading global cause of death and disability.
- There is a lack of published palliative care trials specifically for stroke patients.
- Identifying key outcomes is crucial for designing effective palliative care interventions in stroke.
Purpose of the Study:
- To identify and establish consensus on measurable outcome domains and measures for palliative care in stroke.
- To inform the design of future clinical trials evaluating palliative care interventions for stroke survivors.
Main Methods:
- A multidisciplinary group synthesized recommendations from consensus documents.
- A rapid scoping literature review identified potential outcome measures.
- A three-round Delphi survey and stakeholder workshop engaged professionals and service users to build consensus.
Main Results:
- 36 outcome domains and 16 potential outcome measures were identified.
- Shared decision-making and quality of life emerged as the most critical outcome domains.
- Panelists emphasized the need for feasible, measurable, and relevant outcomes beyond the acute phase.
Conclusions:
- Future palliative care trials in stroke should prioritize pragmatic outcome measures.
- Inclusion of shared decision-making and quality of life is essential.
- Outcomes must reflect the evolving experiences of patients and families post-stroke.
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