Exploring the experiences of physical activity in people with Charcot-Marie-Tooth disease: a qualitative study.

Abstract

Physical activity may improve the function and well-being of individuals with Charcot-Marie-Tooth disease (CMT). We conducted a study to explore patients' experiences related to physical activity, investigating how physiotherapists may promote and facilitate activity. A qualitative study eliciting 10 patients' and 12 physiotherapists' views in four focus groups. Previous experiences shaped how individuals with CMT viewed physical activity. Both individuals with CMT and physiotherapists emphasised a tailored approach that acknowledged personal perspectives, as feeling understood increased motivation. Physiotherapists could facilitate activity and mastery by validating patients' bodily experiences, reassuring them that occasional pain and fatigue are normal, raising awareness of how daily cumulative demands affect symptoms, and assessing signs of abnormal responses. Individuals with CMT recognised that inactivity led to stiffness and heaviness, motivating them to stay active. Both groups called for improved knowledge, collaboration, access to skilled physiotherapists, and stronger professional networks. Previous experiences and beliefs about the benefits and harms of physical activity influence individuals with CMT regarding their views on physical activity. Physiotherapists may promote engagement by nurturing therapeutic relationships and personalising their approach. The shortage of qualified professionals and facilities may restrict opportunities for those with CMT.