Exercise training in adults with neuromuscular diseases: insights from two global surveys of lived experience and clinical practice

Regular exercise may improve health and reduce morbidity in people with neuromuscular diseases. This study examined the application of exercise, perceived barriers to it, perceived benefits from it, and the support needs of healthcare professionals and adults with neuromuscular diseases. Two international online surveys were distributed through professional networks, patient organizations, and social media. A survey for healthcare professionals was open, from August-November 2024. It was answered by 109 respondents from 19 countries across three continents covering respondent profile, prescription practice, perceived barriers, and need for support. A patient survey was open from July-September 2024. It had a response of 1909 adult respondents from 42 countries across six continents covering respondent profiles, engagement in exercise, perceived barriers, and benefits. Although 80% of people with neuromuscular diseases reported engaging in exercise and 94% of healthcare professionals reported prescribing exercise, these estimates are likely influenced by non-response bias. Despite this, 77% of healthcare professionals reported underuse (i.e., insufficient training dose), suggesting that exercise is perceived as not being fully implemented in clinical practice. Aerobic exercise was typically prescribed thrice weekly at moderate intensity for 21-30 minutes, while resistance training was commonly prescribed twice weekly at low-to-moderate intensity for 11-20 minutes. Reported exercise patterns in both surveys were broadly consistent with recent recommendations. Barriers were multifactorial. Healthcare professionals most frequently reported safety concerns, lack of guidelines, and insufficient staff, whereas people with neuromuscular diseases reported health-related concerns and low motivation. People not exercising reported barriers more frequently than people who exercised, and wheelchair use was associated with lower odds of exercise engagement and more barriers. Although exercise is commonly prescribed and widely perceived as beneficial, underuse and barriers remain. Development of personalized guidelines addressing safety, individual motivators, and barriers may support greater exercise participation in adults with neuromuscular diseases.