The PowerMe study started at Radboudumc to map fatigue and quality of life of children with mitochondrial myopathy. After brainstorming with healthcare providers and patients, the researchers developed a self-management program: PowerME. A program consisting of a website with various modules and assignments, supplemented with sessions with a therapist (both live and digital).
The researchers tested this program in 8 patients, aged between 8 and 18, with fatigue complaints. Each participant participated in the study for a total of 33 weeks with the aim of learning how to cope better with fatigue. Weekly questionnaires about fatigue resulted in a tailor-made self-management program that aligns with the personal goals of the participants.
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