Different operationalizations of the capability approach in evaluating rehabilitation for persons with neuromuscular diseases: a mixed-methods study.

Abstract

The capability approach (CA) is increasingly used in healthcare, but its use in evaluating interventions remains challenging. Therefore, in the Rehabilitation and Capability care for patients with Neuromuscular diseases (ReCap-NMD) study, we conducted a mixed-methods analysis to evaluate how rehabilitation affects capabilities of persons with facioscapulohumeral muscular dystrophy or myotonic dystrophy type 1. We explored whether different operationalizations of the CA yield different results to draw lessons about its use in evaluating rehabilitation. We compared semi-structured interviews with the ICEpop CAPability measure for Adults (ICECAP-A) and the Canadian Occupational Performance Measure (COPM) in evaluating changes in capabilities of 26 participants during rehabilitation. Based on interviews, participants were categorized as having worsened, unchanged, or improved capabilities. Quantitative analyses (descriptive statistics, Wilcoxon's signed rank tests, Kruskal-Wallis tests) and qualitative comparisons of interview-based categories with ICECAP-A and COPM scores were conducted to identify differences. Participants categorized as having improved capabilities had also higher COPM follow-up scores, while their ICECAP-A scores were unchanged. Changes related to work, energy management, and disease progression anticipation were not captured by the ICECAP-A. By using a mixed-methods approach, we captured changes in capabilities that occurred during rehabilitation for persons with neuromuscular diseases.