Abstract
METHODS: A multidisciplinary steering group of professionals and laypeople managed the study. We synthesized recommendations from respected United Kingdom and international consensus documents to generate a list of outcome domains and then 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 3-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 finalize this consensus.
RESULTS: We generated a list of 36 different outcome domains from 4 key policy documents. The rapid scoping review identified 43 potential outcome measures that were used to create a shortlist of 16 measures. The 36 outcome domains and 16 measures were presented to a Delphi panel of diverse healthcare professionals and lay service users. Of 48 panelists invited to take part, 28 completed all 3 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 outcomes to be feasible, measurable, and relevant beyond the initial, acute phase of stroke. 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 language | English |
|---|---|
| Pages (from-to) | 3507-3513 |
| Number of pages | 7 |
| Journal | Stroke |
| Volume | 52 |
| Issue number | 11 |
| Early online date | 16 Jul 2021 |
| DOIs | |
| Publication status | Published - Nov 2021 |
Keywords
- cause of death
- palliative care
- consensus
- stroke
- decision making
- quality of life
ASJC Scopus subject areas
- Clinical Neurology
- Cardiology and Cardiovascular Medicine
- Advanced and Specialised Nursing
Documents and Links
- Mason, B. et al (2021) Core outcome measures for palliative and end-of-life research after severe stroke mixed-method Delphi study
This is a non-final version of an article published in final form in Stroke, vol. 52, no. 11, pp. 3507-3513. Stroke is published on behalf of the American Heart Association, Inc., by Wolters Kluwer Health, Inc. © 2021 The Authors. Stroke is published on behalf of the American Heart Association, Inc., by Wolters Kluwer Health, Inc. This is an open access article under the terms of the Creative Commons Attribution Non-Commercial-NoDerivs License, which permits use, distribution, and reproduction in any medium, provided that the original work is properly cited, the use is noncommercial, and no modifications or adaptations are made.
- Mason et al (2021) Core outcome measures for palliative and end-of-life research after severe stroke: mixed-method Delphi study
© 2021 The Authors. Stroke is published on behalf of the American Heart Association, Inc., by Wolters Kluwer Health, Inc. This is an open access article under the terms of the Creative Commons Attribution Non-Commercial-NoDerivs License, which permits use, distribution, and reproduction in any medium, provided that the original work is properly cited, the use is noncommercial, and no modifications or adaptations are made.