Levels of exercise exposure among people living with neuromuscular disorders: lessons learned from real-world data.

There is growing evidence on safety and efficacy of exercise in neuromuscular diseases. We sought to establish the levels of exercise exposure for people living with NMD and its association with mobility levels and pain. A standardized questionnaire was used during clinical follow up consultations to categorise exposure to aerobic, strengthening and stretching exercise for 830 patients with 41 different NMD. The level of exercise exposure of people living with NMD in each type of exercise has been found to be limited and the proportion of patient being complying with WHO physical activity guidelines (8 %) was lower than previously reported. Stretching exercise was the most performed type of exercise (37 %), while resistance exercise was the least performed type of exercise (25 %) with aerobic exercise being performed by 33 %. Associations were found between exercise type and diagnosis, mobility status and pain all using chi square testing with significance level of less than 1 %. Patients with greater levels of mobility were more likely to participate in aerobic and resistance exercise and less likely to participate in stretching exercise. The presence of pain was associated with lack of participation in aerobic and resistance exercise but not stretching exercise. Levels of mobility and presence of pain have been identified as significant factors. It is critical to improve supported access and specific exercise guidelines for people living with NMD.