Understanding the Perseverance of the Muscular Dystrophy Community One-Year into the COVID-19 Pandemic


Translational Research

Poster Number: 168


Leann Lewis, MS, U of R School of Medicine and Dentistry Neurology, Katy Eichinger, PT, PhD, University of Rochester, Nuran Dilek, MS, University of Rochester Medical Center, Kiley Higgs, MS, Kansas University Medical Center, Michaela Walker, MPH, Kansas University Medical Center, David Palmer, John Cooley , Nicholas Johnson, MD, Virginia Commonwealth University, Rabi Tawil, MD, University of Rochester, Jeffrey Statland, MD, University of Kansas School of Medicine

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.