The Energetic study: Effectiveness of a self-management group programme to improve social participation in patients with neuromuscular disease and chronic fatigue.

Background: Chronic fatigue is present in more than 60% of the patients with a neuromuscular disease and can be their most disabling symptom. Chronic fatigue often coincides with low levels of physical activity and decreased social participation. We have developed a self-management outpatient rehabilitation intervention for patients with a neuromuscular disease and chronic fatigue, called Energetic. This multidisciplinary group programme aims to alleviate fatigue, improve physical endurance and social participation. Objective: The aim of this study was to evaluate the effectiveness of Energetic. Methods: A multicentre, assessor-blinded, two-armed randomized controlled trial was conducted. Assessments were made at inclusion, directly after intervention, and three and eleven months followup. We included patients with a neuromuscular disease and chronic fatigue, and their caregivers. The participants were randomized (1:1) to either an intervention (‘Energetic’) or control (‘usual care’) group. Energetic covered four months and included four modules: (1) individually tailored aerobic exercise training; (2) education about aerobic exercise; (3) self-management training in applying energy-conservation strategies; and (4) implementation and relapse prevention in daily life. The primary outcome was the perceived performance score of the Canadian Occupational Performance Measure (COPM). Secondary outcomes included the COPM satisfaction score, and measures of fatigue, physical endurance, activity engagement, mood, self-efficacy and caregiver-burden. Results: Fifty-three patients were included. There was significantly more improvement on COPM-performance, COPM-satisfaction, Checklist Individual Strength (CIS), CIS subscale-fatigue and 6-Minute Walk Test for the intervention group than the control group after intervention, adjusted for baseline COPM scores, gender, work and diagnosis. Conclusion: These results warrant further implementation of this intervention in different settings. [ABSTRACT FROM AUTHOR]