A scoping review of outcome and outcome measure sets for adults with spinal cord injury, stroke, and traumatic brain injury
DOI:
https://doi.org/10.2340/jrm.v58.45634Keywords:
Learning Health System, Neurorehabilitation, stroke, traumatic brain injury, spinal cord injury, Core Outcome Sets, Outcome measuresAbstract
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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