A patient-focused survey to assess the effects of the COVID-19 pandemic and social policies on people with muscular dystrophy

Objective: To examine the social and health impacts of the pandemic and social policies on people with muscular dystrophies. Background: The COVID-19 pandemic and social policies have disrupted all aspects of community life in the United States, but the impact on people with progressive muscular dystrophies is unknown. Design/Methods: The COVID-19 and Social Policy Impact Survey was developed by muscular dystrophy experts in association with patient collaborators and advocacy groups. The survey assesses social impact;impact on disease;exercise;use of telemedicine;and effect on research. Overall stress was measured using the Perceived Stress Scale, a validated 10-item inventory of stress. We conducted a prospective de-identified electronic survey of people with muscular dystrophy residing in the US from May 8, 2020 to May 28, 2020. An IRB-approved information letter with an embedded link to the survey was emailed to registry participants who had agreed to be contacted by email, or posted as notifications on advocacy websites. Results: Respondents (n=774: 56% FSHD;35% DM, and 9% LGMD) were mostly women and middle-aged (range 19-87 years). Rates of COVID-19 infections were low (<1%) and compliance with social distancing policies high (98%). Major challenges reported during the pandemic included: obtaining treatment (40%), managing stress (37%), social distancing (36%), and obtaining essentials (34%). Of those who reported a change in their disease, the majority reported slight worsening. Respondents reported moderate stress levels (stress score= 15.4;range= 0-35), with higher stress levels reported by women and those under age 30 years. Threequarters of participants who participated in telemedicine visits were satisfied with the encounters;however, most reported a preference for in-person visits. Conclusions: People with muscular dystrophy reported multiple challenges due to COVID-19 social policies, and moderate levels of stress. Future interventions like exercise and stress-coping strategies, including strategies specific to women or individuals < 30 years, may be important.