Evidence map›Paper›PMID 34266306›Full record

ArticleStroke2021

Core Outcome Measures for Palliative and 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 and 1 more

Open access · hybridAbstract read
In one paragraph

Article in Stroke, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.

0numbers the graph read from it
0cells of the map it votes in
6citing papers in PubMed
3.4field-weighted citation impact, top 7% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

6 citing papers in PubMed, 14 citations in OpenAlex.

  1. Trial
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

11 authors at 7 institutions in 4 countries.

Bruce MasonUsher Institute (B.M., K.B., S.L., S.M, G.E.M).ORCID 0000-0002-9304-3362
Kirsty BoydUsher Institute (B.M., K.B., S.L., S.M, G.E.M).ORCID 0000-0002-5526-1078
Fergus DoubalCentre for Clinical Brain Sciences (F.D).
Mark BarberUniversity of Edinburgh, University Hospital, Monklands, NHS Lanarkshire (M. Barber).ORCID 0000-0002-2893-1566
Marian BradyMidwifery and Allied Health Professions Research Unit, Glasgow Caledonian University (M. Brady).
Eileen CoweyNursing & Health Care School (E.C.), University of Glasgow.ORCID 0000-0001-9241-9500
Akila VisvanathanNHS Lothian and University of Edinburgh (A.V.).ORCID 0000-0002-9713-8713
Steff LewisUsher Institute (B.M., K.B., S.L., S.M, G.E.M).ORCID 0000-0003-1210-2314
Katie GallacherInstitute of Health and Wellbeing (K.G.), University of Glasgow.ORCID 0000-0001-8620-8758
Sarah MortonUsher Institute (B.M., K.B., S.L., S.M, G.E.M).
Gillian E MeadUsher Institute (B.M., K.B., S.L., S.M, G.E.M).
Allen Institute · USUniversity of Glasgow · GBCentre for Inflammation Research · GBClinical Institute of Brain · RUGlasgow Caledonian University · GBNHS Lanarkshire · GBNHS Lothian · GB

Funding

Chief Scientist Office CGA/19/04Chief Scientist Office CZH/4/1033
6 · The paper itself

Abstract

Background and Purpose: Stroke is the second commonest cause of death worldwide and a leading cause of severe disability, yet there are no published trials of palliative care in stroke. 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 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.

Indexed as

Palliative CareStrokeTerminal CareClinical Trials as TopicDelphi TechniqueEndpoint DeterminationHumansOutcome Assessment, Health CareResearch Designcause of deathconsensusdecision makingpalliative carequality of lifestroke

Identifiers

PMID34266306
PMCPMC8547585
OpenAlexW3182344822

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.