A Patient-Focused Survey to Assess the Effects of the COVID-19 Pandemic and Social Guidelines on People with Muscular Dystrophy

Translational Research
Leann Lewis MS, Katy Eichinger PT, PhD, Nuran Dilek MS, Kiley Higgs MS, Michaela Walker MPH, David Palmer , John Cooley , Nicholas Johnson MD, Rabi Tawil MD, Jeffery Statland MD
1. University of Rochester Medical Center, 2. University of Rochester Medical Center, 3. University of Rochester Medical Center, 4. Kansas University Medical Center, 5. Kansas University Medical Center, 8. VCU, 9. University of Rochester, 10. University of Kansas Medical Center

Background: The coronavirus disease 2019 (COVID-19) pandemic and social guidelines have required unprecedented changes in social conventions worldwide; most policies were driven by the need to control the spread of the pandemic. These policies have limited access to medical care, or caused changes to care delivery strategies, including a rapid transition from face-to-face encounters to use of telehealth visits. In addition, certain populations, like individuals with cardiac or respiratory disease were considered high risk. Certain muscular dystrophies (MD) can be associated with cardiopulmonary complications, thus putting these patients at higher risk. The effect of the pandemic and social guidelines on people with MD is currently unknown.
Objective: In this study, we examined the social and health impacts of the COVID-19 pandemic on people with muscular dystrophies.
Methods: A prospective de-identified electronic survey was distributed to adults with self-reported Facioscapulohumeral Muscular Dystrophy (FSHD), Myotonic Dystrophy (DM), or Limb-Girdle Muscular Dystrophy (LGMD) enrolled in national registries.
The COVID-19 and Social Guidelines Impact Survey was developed by muscular dystrophy experts in association with patient collaborators and advocacy groups. Overall stress was measured using the Perceived Stress Scale.
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 local social distancing guidelines and policies high (98%). Major challenges reported during the pandemic included: obtaining treatment (40%), managing stress (37%), social distancing (36%), and obtaining essentials (34%). The majority reported a slight worsening in their disease state. 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. Three-quarters 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 moderate stress and challenges during to the COVID-19 pandemic. Interventions like exercise and stress-coping strategies, including strategies specific to women or individuals < 30 years, may be important. Further investigation is needed into the role of telemedicine in the care of individuals with MD.