A scoping review of outcome and outcome measure sets for adults with spinal cord injury, stroke, and traumatic brain injury

BACKGROUND: Standardized outcome measurement is essential for embedding neurorehabilitation within learning health systems. However, existing core outcome sets and standard outcome measure sets for stroke, traumatic brain injury, and spinal cord injury have not been synthesized across conditions. OBJECTIVE: To synthesize outcome domains and measures included in core outcome sets and standard outcome measure sets for stroke, traumatic brain injury, and spinal cord injury, and examine involvement of persons with lived experience in their development. METHODS: A scoping review was conducted following JBI methodology and PRISMA-ScR guidelines. MEDLINE, Embase, CINAHL, and PsycINFO were searched (May 2025). Studies describing development or evaluation of core outcome sets or standard outcome measure sets for adults with stroke, traumatic brain injury, or spinal cord injury were included. Outcomes and measures were mapped to the International Classification of Functioning, Disability and to "meaningful outcomes". RESULTS: Forty-eight studies were included. Over half (54%) of meaningful outcomes were shared across all 3 conditions; however, only 3% of outcome measures were recommended across conditions. Measures were absent for some patient-​prioritized domains, including accessible environments and attitudes of others. Persons with lived experience were involved in 35% of studies. CONCLUSION: While rehabilitation priorities are conceptually aligned across conditions, measurement remains fragmented and patient engagement is limited. Harmonized, patient-informed, and implementable outcome strategies are needed to support learning health systems-driven neurorehabilitation.

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Publication Details

Journal
Journal of Rehabilitation Medicine
Published
2026-07-17
DOI
https://doi.org/10.2340/jrm.v58.45634
Primary Topic
Traumatic Brain Injury Research
Type
article
Field-Weighted Citation Impact
0.00

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article

A scoping review of outcome and outcome measure sets for adults with spinal cord injury, stroke, and traumatic brain injury

Mahtab Azhdar, Liz Dennett, Snigdha Widge, Erin McCabe et al.
Journal of Rehabilitation Medicine
Traumatic Brain Injury Research
article

A scoping review of outcome and outcome measure sets for adults with spinal cord injury, stroke, and traumatic brain injury

Mahtab Azhdar, Liz Dennett, Snigdha Widge, Erin McCabe, Ahlam Zidan, Sarah Kalis, Alyson Kwok
article en

Abstract

BACKGROUND: Standardized outcome measurement is essential for embedding neurorehabilitation within learning health systems. However, existing core outcome sets and standard outcome measure sets for stroke, traumatic brain injury, and spinal cord injury have not been synthesized across conditions. OBJECTIVE: To synthesize outcome domains and measures included in core outcome sets and standard outcome measure sets for stroke, traumatic brain injury, and spinal cord injury, and examine involvement of persons with lived experience in their development. METHODS: A scoping review was conducted following JBI methodology and PRISMA-ScR guidelines. MEDLINE, Embase, CINAHL, and PsycINFO were searched (May 2025). Studies describing development or evaluation of core outcome sets or standard outcome measure sets for adults with stroke, traumatic brain injury, or spinal cord injury were included. Outcomes and measures were mapped to the International Classification of Functioning, Disability and to "meaningful outcomes". RESULTS: Forty-eight studies were included. Over half (54%) of meaningful outcomes were shared across all 3 conditions; however, only 3% of outcome measures were recommended across conditions. Measures were absent for some patient-​prioritized domains, including accessible environments and attitudes of others. Persons with lived experience were involved in 35% of studies. CONCLUSION: While rehabilitation priorities are conceptually aligned across conditions, measurement remains fragmented and patient engagement is limited. Harmonized, patient-informed, and implementable outcome strategies are needed to support learning health systems-driven neurorehabilitation.

Journal of Rehabilitation MedicineVol. 58
University of Alberta (CA)
Canadian Institutes of Health Research
Openalex Percentile: Top 8%
Traumatic Brain Injury Research
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