A patient‐focused survey to assess the effects of the COVID‐19 pandemic and social guidelines on people with muscular dystrophy

Introduction/Aims In this study, we examined the social and health impacts of the coronavirus disease 2019 (COVID‐19) pandemic and social guidelines on people with muscular dystrophies. Methods A prospective de‐identified electronic survey was distributed to adults with self‐reported facioscapulohum...

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Bibliographic Details
Published in:Muscle & nerve 2021-09, Vol.64 (3), p.321-327
Main Authors: Eichinger, Katy, Lewis, Leann, Dilek, Nuran, Higgs, Kiley, Walker, Michaela, Palmer, David, Cooley, John M., Johnson, Nicholas, Tawil, Rabi, Statland, Jeffrey
Format: Article
Language:English
Subjects:
Clinical
Clinical s
Coronaviruses
COVID-19
Disease control
Dystrophy
Guidelines
Muscular dystrophy
Myotonic dystrophy
pandemic
Pandemics
Patients
perceived stress scale
Polls & surveys
Social distancing
Social interactions
Stress
Telemedicine
Viral diseases
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Description
Summary:Introduction/Aims In this study, we examined the social and health impacts of the coronavirus disease 2019 (COVID‐19) pandemic and social guidelines 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), and limb‐girdle muscular dystrophy (LGMD) enrolled in national registries or with patient advocacy groups. The COVID‐19 Impact Survey was developed by muscular dystrophy experts in association with patient collaborators and advocacy groups. The Perceived Stress Scale was used to measure perceived stress. Results Respondents (n = 774: 56% FSHD; 35% DM, and 9% LGMD) were mostly women and middle‐aged (range 19–87 y). Rates of COVID‐19 infections were low (
ISSN:0148-639X
1097-4598
DOI:10.1002/mus.27349