Consensus on core outcome measures for palliative or end-of-life research after severe stroke: mixed-method Delphi study

Bruce Mason, Kirsty Boyd*, Fergus Doubal, Mark Barber, Marian Brady, Eileen Cowey, Akila Visvanathan, Steff Lewis, Katie Gallacher, Sarah Morton, Gillian E. Mead

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

Abstract

Background and Purpose
Stroke is the second commonest cause of death worldwide and a leading cause of severe disability, yet there are no trials of palliative care in stroke. In order to design and evaluate palliative care interventions for people with stroke, researchers need to know what measurable outcomes matter most to patients and families, stroke professionals and other service providers.

Methods
A multidisciplinary steering group of professionals and lay people managed the study. We synthesised recommendations from respected UK and international consensus documents to generate a list of outcome domains and performed a rapid scoping literature review to identify potential outcome measures for use in future trials of palliative care after stroke. We then completed a three-round, online Delphi survey of professionals and service users to build consensus about outcome domains and outcome measures. Finally, we held a stakeholder workshop to review and finalise this consensus.

Results
We synthesised recommendations from four key policy documents to generate a list of 36 different outcome domains. The rapid scoping review identified 43 potential outcome measures used to create a shortlist of 16 relevant measures. The 36 outcome domains and 16 measures were presented to a Delphi panel of diverse healthcare professionals and lay service users. Of 48 panellists invited to take part, 28 completed all three rounds. Shared decision-making and quality of life were selected as the most important outcome domains for future trials of palliative care in stroke. Additional comments highlighted the need for trial outcomes to be feasible, measurable, and relevant to life after stroke beyond the initial, acute phase. The stakeholder workshop endorsed these results.

Conclusions
Future trials of palliative care after stroke should include pragmatic outcome measures, applicable to the evolving patient and family experiences after stroke and be inclusive of shared decision-making and quality of life.
Original languageEnglish
JournalStroke
Publication statusAccepted/In press - 10 Jun 2021

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