Objective: To assess the long-term social and health impacts of the COVID-19 pandemic on people with muscular dystrophy (MD).
Background: As the COVID-19 pandemic persisted, it has produced lasting impacts on daily life worldwide. People with muscular dystrophy are potentially at a higher risk for complications when infected with COVID-19, but little is known about the continued impact of COVID-19 on the MD population.
Methods: We modified our prior COVID-19 Impact Survey using feedback from muscular dystrophy experts, patients, and advocacy group/registry representatives to assess impacts from the continuing pandemic. The survey assessed COVID-19 medical history, and the effects of the pandemic on social aspects, muscle disease, and medical care. We also used the Perceived Stress Scale, a validated 10-item scale. The de-identified, electronic survey was distributed to adults with muscular dystrophy via international patient registries or advocacy group websites from February 8, 2021 to March 22, 2021.
Results: Respondents (n=1243: 49% FSHD; 43% DM, and 8% LGMD) were mostly women and middle-aged (range 18-90). COVID-19 infection rates were 8%. Reported recovery times were typically less than 2 weeks with only 9% reporting recovery greater than 8 weeks, and 7% requiring hospitalization. Major challenges reported during the pandemic included stress management (27%) and wearing a mask (24%). The majority reported a slight worsening of their disease. Respondents reported moderate stress levels (average= 16.4; range= 0-39), with higher stress levels reported by women and those under age 30 years. Of the participants who had telemedicine visits, 70% reported satisfaction; however, most prefer in-person visits.
Conclusions: People with MD found ways to manage their stress and overcome obstacles during the COVID-19 pandemic. COVID-19 infection rates and medical complications were similar to a general population. Telemedicine visits may have a more permanent role in care.