Self-management program improves participation in patients with neuromuscular disease: A randomized controlled trial

Objective To investigate the effectiveness of Energetic, a self-management group program combining aerobic training, energy conservation management, and relapse prevention to improve social participation in patients with neuromuscular disease (NMD) and chronic fatigue. Methods In this multicenter, assessor-blinded, 2-armed randomized controlled trial with repeated measurements, 53 patients with various types of NMD and chronic fatigue were randomly allocated to Energetic, a 4-month group intervention, or to usual care. The primary endpoint was social participation assessed with the Canadian Occupational Performance Measure (COPM) performance scale immediately postintervention. Secondary outcomes included COPM satisfaction scale, 6-Minute Walk Test (6MWT), and Checklist Individual Strength–subscale fatigue. Participants were followed for 11 months postintervention. Data were analyzed with linear models that account for repeated measurements. Results Directly after intervention, the mean group difference for COPM-performance was 1.7 (95% confidence interval [CI] 1.0–2.4; p Conclusion Energetic led to sustainable improvements in social participation and functional endurance compared to usual care in patients with NMD and chronic fatigue. Clinicaltrials.gov identifier NCT02208687. Classification of evidence This study provides Class III evidence that a combination of aerobic training, energy conservation management, and relapse prevention improves social participation in patients with NMD and chronic fatigue.