THE ENERGETIC STUDY: EFFECTIVENESS OF A SELF-MANAGEMENTGROUP 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 which often results in low levels of physical activity and decreased social... [ view full abstract ]

Background:
Chronic fatigue is present in more than 60% of the patients with a neuromuscular disease and can
be their most disabling symptom which often results in low levels of physical activity and decreased social participation. ‘Energetic’ is a self-management group programme for patients with a neuromuscular disease and fatigue that aims to improve social participation and physical endurance and to alleviate fatigue. The aim of this study is to evaluate the effectiveness of the Energetic programme.
Method:
A multicentred, assessor-blinded, two-armed randomised controlled trial is conducted with
evaluations at inclusion and four, seven and fifteen months later. The study includes patients with a neuromuscular disease and chronic fatigue, and their caregivers. The participants are randomised (ratio 1:1) to either an intervention group or a control group (usual care). The Energetic programme covers four months and includes 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 is the perceived performance score of the Canadian Occupational Performance Measure (COPM). Secondary outcomes include the COPM-satisfaction score, and measures of fatigue, physical endurance, activity engagement, mood, self-efficacy and caregiver burden.
Results/Conclusion:
Until January 2016 the data are collected. In June 2016 we will present the outcomes of the primary and secondary outcome measures.
Application to Practice:
If this study provides evidence for the effectiveness of the Energetic programme, further implementation of this intervention is warranted.