Measuring Progress: Developing a Core Outcome Set for Activity-based Therapy for People with a Spinal Cord Injury

Research Objectives: To identify the outcome measures to include in a core outcome set for community-based activity-based therapy (ABT) after spinal cord injury/disease (SCI/D) in Canada.

Design: Exploratory sequential mixed-methods.

Setting: Virtual research environment.

Participants: A group of 10 experts in ABT (3 men, 7 women) including physical therapists, occupational therapists, researchers, kinesiologists, and individuals with SCI/D were recruited through purposive sampling.

Interventions: None.

Main Outcome Measures: The outcome measures used in ABT research were identified through a secondary analysis of a scoping review on the characteristics of ABT for SCI/D. Descriptive statistics described the use of these measures. The psychometric properties of measures used in >1 study were sought from the literature, and the clinical utility of each measure was evaluated. Five focus group meetings were held on Zoom with experts in ABT. Meetings focused on 1) creating a conceptual model of ABT outcomes, which involved identifying the constructs that a core outcome set should measure, and 2) mapping the measures identified through the scoping review onto the model. A semi-structured interview guide led meeting discussions. Meeting transcripts were analyzed with thematic analysis.

Results: A total of 224 outcome measures were identified through the scoping review; 22 measures had moderate to high clinical utility (>6 on a 10-point scale) and strong psychometric properties. The Modified Health through Sport Conceptual Model and International Classification of Functional, Disability and Health were used to create a conceptual model of ABT outcomes that included the domains of physical, psychological, and social wellbeing. Outcome measures for each domain were identified through the mapping exercise, with most outcomes measuring the physical domain.

Conclusions: Outcome measures for a core outcome set for community-based ABT after SCI/D were identified. Adoption of a standardized core outcome set will enable the collection of data that may inform ABT practice guidelines.

Author(s) Disclosures: Funded by the Praxis Spinal Cord Institute.