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Cited by 47Stroke Rehabilitation and RecoveryDelphi Technique in ResearchMedical Practices and Rehabilitation

More Outcomes than Trials: A Call for Consistent Data Collection across Stroke Rehabilitation Trials

Ali, M., English, C., Bernhardt, J., Sunnerhagen, K. S., Brady, M.·2013·International Journal of Stroke
DOI 10.1111/j.1747-4949.2012.00973.x
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Abstract

Stroke survivors experience complex combinations of impairments, activity limitations, and participation restrictions. The essential components of stroke rehabilitation remain elusive. Determining efficacy in randomized controlled trials (RCTs) is challenging; there is no commonly agreed primary outcome measure for rehabilitation trials. Clinical guidelines depend on proof of efficacy in RCTs and meta-analyses. However, diverse trial aims, differing methods, inconsistent data collection, and use of multiple assessment tools hinder comparability across trials. Consistent data collection in acute stroke trials has facilitated meta-analyses to inform trial design and clinical practice. With few exceptions, inconsistent data collection has hindered similar progress in stroke rehabilitation research. There is an urgent need for the routine collection of a core dataset of common variables in rehabilitation trials. The European Stroke Organisation Outcomes Working Group, the National Institutes of Neurological Disorders and Stroke Common Data Elements project, and the Collaborative Stroke Audit and Research project have called for consistency in data collection in stroke trials. Standardizing data collection can decrease study start up times, facilitate data sharing, and inform clinical guidelines. Although achieving consensus on which outcome measures to use in stroke rehabilitation trials is a considerable task, perhaps a feasible starting point is to achieve consistency in the collection of data on demography, stroke severity, and stroke onset to inclusion times. Longer term goals could include the development of a consensus process to establish the core dataset. This should be endorsed by researchers, funders, and journal editors in order to facilitate sustainable change.

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  • Wallace and colleagues proposed a core outcome set for aphasia that defines a minimum group of outcomes for routine administration.

    “Wallace and colleagues proposed a core outcome set (COS)13,15–18 for aphasia, specifying a minimum set of outcomes that should be administered to persons with aphasia as standard practice (i.e., WAB, The Scenario Test, General Health Questionnaire-12, SAQOL-39g) to increase consistency.”

    From Benchmarks of Significant Change After Aphasia Rehabilitation (2019) · cites this paper as [13]

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Authors
Ali, M., English, C., Bernhardt, J., Sunnerhagen, K. S., & Brady, M.
Affiliations
  • Glasgow Caledonian University (GB)
  • University of South Australia (AU)
  • Austin Health (AU)
  • University of Gothenburg (SE)
Corresponding author
Ali, M.
ORCID
Venue
International Journal of Stroke
Publisher
SAGE Publications
Published
2012-12-24
Volume
8
Issue
1
Pages
18-24
ISSN
  • 1747-4930 (ISSN-L)
  • 1747-4949
DOI
10.1111/j.1747-4949.2012.00973.x
OpenAlex
W2110292756
Cited by
47
References
31
Citations by year
2026: 2 · 2025: 2 · 2024: 2 · 2023: 4 · 2022: 1 · 2021: 3 · 2020: 4 · 2019: 4 · 2018: 5 · 2017: 7 · 2016: 6 · 2014: 7
FWCI
0.29
Type
journal article
Language
en
Open access
closed
Licence
journals.sagepub.com/page/policies/text-and-data-mining-license (tdm)
Locations
  • International Journal of Stroke (publishedVersion)
  • PubMed (publishedVersion)
  • ResearchOnline (Glasgow Caledonian University) (acceptedVersion)
  • Adelaide Research & Scholarship (AR&S) (University of Adelaide) (submittedVersion)
  • ENLIGHTEN (Jurnal Bimbingan dan Konseling Islam) (submittedVersion)
  • Minerva Access (University of Melbourne) (submittedVersion)
  • UEA Digital Repository (University of East Anglia) (submittedVersion)
Funders
National Institute for Health and Care Research (HTA/08/14/51, 08/14/51)
Topics
  • Health Sciences › Medicine › Rehabilitation › Stroke Rehabilitation and Recovery
  • Social Sciences › Sociology and Political Science › Delphi Technique in Research
  • Health Sciences › Health Professions › Physical Therapy, Sports Therapy and Rehabilitation › Medical Practices and Rehabilitation
Keywords
stroke rehabilitation, data collection standardization, common data elements, outcome measures, randomized controlled trials, trial comparability, stroke severity, stroke onset, core dataset, meta-analysis, clinical guidelines, data sharing
MeSH terms
Stroke Rehabilitation, Clinical Trials as Topic, Data Collection, Humans, Research Design, Outcome Assessment, Health Care

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