ABSTRACT
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 has continued, 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 muscular dystrophy population. Design/Methods: We modified our prior COVID-19 Impact Survey (K. Eichinger, et al) to assess impacts from the continuing pandemic using feedback from muscular dystrophy experts, patients, and advocacy group/registry representatives. 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 slightly more 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= 15.8;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 preferred in-person visits. Conclusions: People with muscular dystrophy reported moderate stress and challenges 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, though inperson visits are still preferred.
ABSTRACT
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.