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.
Snigdha Widge, Ahlam Zidan, Alyson Kwok, Mahtab Azhdar, Sarah Kalis, Liz Dennett, Erin McCabe
Disease Category: Neurology
Disease Name: Brain injury (traumatic), Spinal cord injury (SCI), Stroke
Age Range: 18 - 120
Sex: Either
Nature of Intervention: Rehabilitation
- Systematic review of core outcome sets
- Systematic review
- Use of the International Classification of Functioning, Disability and Health (ICF)
- Mapped each identified outcome, outcome measure, and ICF domain to ICF chapters using a standardized protocol. Inter-rater reliability for ICF coding was assessed using Cohen’s kappa (k = 0.82). The reviewers then extracted key concepts to identify the ICF chapters covered by each outcome or measure.
- After ICF mapping, found that ICF Chapters were too broad to be meaningfully interpreted (e.g., mental functions include cognition and mental health, which are important concepts to separate), while the ICF Domains were too granular to allow meaningful interpretation across conditions. Therefore, developed a set of “meaningful outcomes” by combining outcomes and ICF domains into broader categories.
- Development of the meaningful outcome categories done using an iterative inductive coding process and consensus discussions. Outcomes from COS and ICF domains were independently reviewed and codes were created representing similar concepts across outcomes and domains. The study team compared and discussed their codes. Through an iterative consensus process, related codes were combined resulting in a final set of meaningful outcomes and accompanying definitions.