216P A questionnaire-based investigation into levels physical disability and of physical activity in adults with neuromuscular disease in a UK neuromuscular centre

Abstract

Neuromuscular diseases (NMD) are either genetic or acquired, and to date, most have no specific pharmaceutical intervention effective in arresting or improving disease progression. They are, therefore, all progressive in nature with a gradual or rapid loss of functional abilities; loss of ambulation, upper or lower limb weakness or both, loss of independence and associated co-morbidities; respiratory, cardiac, diabetes, and obesity. Neuromuscular diseases are complex and require careful management. One intervention that is available to most NMD patients is physical activity (PA). Physical activity has been shown to have benefits and be safe for those with NMD. Therefore, NMD patients should be encouraged to engage in physical activity. To assess adult patients with NMD and participation in physical activity, the 'Rapid Assessment of Physical Activity' (RAPA) was used. This is a patient questionnaire that uses a 'yes/no' format with 7 fields, with 1 being no physical activity to 7 being vigorous activity for 20 minutes, 3 or more times, per week. Stretching and resistance training are also assessed. To determine the level of physical impairment the 'Summary of Functional Tests' (SOFT) was used. This simple assessment tool provides a quantitative description of a person's physical function. We present the results (n=66) of a prospective review of adult patients seen in a NM clinic between May and December 2023 and delivered and assessed by 2 NM specialist physiotherapists. Taken together the RAPA plus the SOFT should provide an overview of the level of physical activity engagement and physical impairment. Findings can used to determine if NMD patients engage in physical activity and if this is at the recommended amount, as per the American College of Sports Medicine guidelines.