Understanding the Resiliency of the Muscular Dystrophy Community One-Year into the COVID-19 Pandemic
Neurology
; 98(18 SUPPL), 2022.
Article
in English
| EMBASE | ID: covidwho-1925352
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.
adult; advocacy group; complication; conference abstract; controlled study; coronavirus disease 2019; facioscapulohumeral muscular dystrophy; female; hospitalization; human; infection rate; major clinical study; mask; medical care; medical history; middle aged; muscular dystrophy; pandemic; patient registry; Perceived Stress Scale; satisfaction; social aspect; stress management; telemedicine
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Collection:
Databases of international organizations
Database:
EMBASE
Language:
English
Journal:
Neurology
Year:
2022
Document Type:
Article
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