Award Title: Development of a core outcome set for clinical research on interventions for speech impairments in Stroke:  COS-Speech
Funder: Department of Health and Social Care

Abstract: Research question: What is the core outcome set (COS-Speech) and agreed measures for speech intelligibility after stroke?  Background: Dysarthria (reduced speech intelligibility) is a common consequence of stroke leading to social isolation and low self-confidence. This speech difficulty after stroke has been neglected with few research studies. Dysarthria can occur after any type of stroke and varies in severity of impairment. There are different types of dysarthria (e.g. spastic, hypokinetic), which can also co-occur with and without aphasia (language difficulties). Our Cochrane review of dysarthria intervention found a lack of consensus around outcome measures and the need for a core outcome set for speech recovery was highlighted. A core outcome set would be of use in both clinical practice and research studies to compare the findings from different therapy trials of dysarthria.     Aims and objectives:   The first aim is to agree  what  aspects of communication we should measure when monitoring speech recovery, i.e. what is the core outcome set for all types of dysarthria caused by any type of stroke (COS-Speech)?  The second aim is agreement of 'how' to measure speech recovery, i.e. what tests/assessments/scales/behavioural sampling we should use with COS-Speech?     Methods: Using active co-design and patient, public involvement, we will develop a core outcome set with relevant stakeholders to reach an international consensus for COS-Speech following existing guidance using an e-Delphi process. The stakeholder participants will include people with lived experience of dysarthria after stroke, clinicians and researchers. We will use internationally accepted standards for COS development, which provides guidance on COS scope, stakeholder involvement and consensus methods.  To reach agreement of  how  to measure the core outcome set we will systematically evaluate the possible measurement tools, this will be followed by consensus agreement. Our evaluation will use the recommended international guidelines to examine reliability, validity, responsiveness and interpretability.     Timelines for delivery:  Work package 1: The development of COS-Speech months 1-18. This will include ethics approval (month 1-2), recruitment video (month 1-2), recruitment of stakeholders (months 1-4), long list of possible domains (months 1-4), e-Delphi round 1 and analysis (months 6-9), round 2 and analysis (months 10-14), Consensus meeting (month 15), write up and dissemination with PPI months 16-18.  Work package 2: A systematic review of the measurements for COS-Speech months 5-18 (14 months). This will run concurrently with work package 1. In months 5-6 we will identify all existing dysarthria instruments (scales/tests/assessments) and systematically review these (months 5-15). A further Consensus meeting to agree which measures should map onto each domains in COS-Speech (month 16). Write up and dissemination with PPI month 16-18.  Anticipated impact and dissemination:  A systematic review of the various tests/scales and assessments for dysarthria.  A core outcome set for dysarthria (COS-Speech) agreed through consensus. Through consensus, relevant measures (where possible) will be mapped onto the COS-Speech domains.  Co-produced blogs and use of social media with the PPI research advisors will be produced to reach a wider audience of patients, public and health professionals to explain COS-Speech and associated measures.

Lay Abstract: Acknowledgement: We would like to acknowledge the support in writing this section from Annette Dancer our PPI co-applicant.   Background to the research:  Dysarthria, where speech is less clear, slurred or sounds different after stroke is distressing for those affected. This can have a major effect on a person s confidence to mix and talk to other people. There is not much research in dysarthria and the ones we have all measure different things.  To be able to compare research it is important they all measure the same things so we can work out which treatment is best.  It is important that research looks at what is meaningful to those affected by dysarthria which is a long term condition. We will include all different types of dysarthria after stroke and those who also have problems with finding the right words or understanding (called aphasia).  People with dysarthria after stroke should be involved in planning research and choosing 'what' and 'how' speech recovery is measured. We would also include views from clinicians and researchers working in dysarthria after stroke. This will help clinicians know which speech measures are most important for patients. Researchers will know what speech measures they should always include when doing dysarthria research.   The question we have jointly developed with our stroke survivors who have dysarthria is, can we identify how best to measure speech recovery after a stroke?  This research aims to:    Identify and agree what needs to be measured in speech recovery called 'a core outcome set' (COS-Speech)  Agree what tests/scales or assessments should be used to measure these core outcomes      How we will do this research?  For aim 1 we will:    record a short video explaining the project  use this video to advertise the research and to get people involved  get people involved from three key groups:     People who have lived experience of dysarthria after stroke    People working clinically in this area such as speech and language therapists   People involved in dysarthria research      We will ask all of these people to express their views on how to measure speech recovery  We will do this by sending round several questionnaires over email so people can decide on the most important and least important  A computer programme will help us to monitor all the answers  We can then all agree in workshops what aspects of speech recovery should be measured leading to our core outcome set COS-Speech      For aim 2 we will:    Consider all the tests/scales or assessments that could be used to measure COS-Speech  Look at all of these and work out which are the best ones  Agree with our three key groups which should be used  We will share all our findings in clear and plain language

Research Activity Codes: 2.5 RESEARCH DESIGN AND METHODOLOGIES (AETIOLOGY)
Health Categories: STROKE