Towards a core outcome set for dysarthria after stroke: What should we measure?

Objective: To identify and agree on what outcome domains should be measured in research and clinical practice when working with stroke survivors who have dysarthria.
Design: Delphi process, two rounds of an online survey followed by two online consensus meetings.
Setting: UK and Australia.
Participants: Stroke survivors with experience of dysarthria, speech and language therapists/pathologists working in stroke and communication researchers.
Methods: Initial list of outcome domains generated from existing literature and with our patient and public involvement group to develop the survey. Participants completed two rounds of this survey to rate importance. Outcomes were identified as ‘in’, ‘unclear’ or ‘out’ from the second survey. All participants were invited to two consensus meetings to discuss these results followed by voting to identify critically important outcome domains for a future Core Outcome Set. All outcomes were voted on in the consensus meetings and included if 70% of meeting participants voted ‘yes’ for critically important.
Results: In total, 148 surveys were fully completed, and 28 participants attended the consensus meetings. A core outcome set for dysarthria after stroke should include four outcome domains: (a) intelligibility of speech, (b) ability to participate in conversations, (c) living well with dysarthria, (d) skills and knowledge of communication partners (where relevant).
Conclusions: We describe the consensus of ‘what’ speech outcomes after stroke are valued by all stakeholders including those with lived experience. We share these findings to encourage the measurement of these domains in clinical practice and research and for future research to identify ‘how’ best to measure these outcomes

Aim

The aim of this study is to develop a core outcome set (COS) to agree what aspects of speech recovery should be measured for dysarthria after stroke (COS-Speech) in research and clinical practice.

Contributors

Claire Mitchell, Kate Woodward-Nutt, Annette Dancer, Stephen Taylor, Joe Bugler, Audrey Bowen, Paul Conroy, Brooke-Mai Whelan, Sarah J Wallace, Sabrina El Kouaissi and Jamie Kirkham

Publication

Journal: Clinical Rehabilitation
Volume:
Issue:
Pages: -
Year: 2024
DOI: 10.1177/02692155241231929

Further Study Information

Current Stage: Completed
Date:
Funding source(s): This project is funded by the National Institute for Health and Care Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number NIHR202748). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. This work is also funded by a personal postdoctoral fellowship to CM from the Stroke Association (https://www.stroke.org. uk/) SA_PDF_21\100017. Sarah J. Wallace is supported by a National Health and Medical Research Council (NHMRC) Emerging Leadership Investigator Grant (1175821).


Health Area

Disease Category: Rehabilitation

Disease Name: Stroke

Target Population

Age Range: 18 - 120

Sex: Either

Nature of Intervention: Rehabilitation

Stakeholders Involved

- Clinical experts
- Consumers (patients)
- Researchers

Study Type

- COS for clinical trials or clinical research
- COS for practice
- Recommendations for outcome measures (measurement/how)

Method(s)

- Consensus meeting
- Delphi process
- Focus group(s)
- Systematic review

Initial list of outcome domains generated from existing literature and with our patient and public involvement group to develop the survey. Participants completed two rounds of this survey to rate importance. Outcomes were identified as ‘in’, ‘unclear’ or ‘out’ from the second survey. All participants were invited to two consensus meetings to discuss these results followed by voting to identify critically important outcome domains for a future Core Outcome Set. All outcomes were voted on in the consensus meetings and included if 70% of meeting participants voted ‘yes’ for critically important.