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A patient-focused survey to assess the effects of the COVID-19 pandemic and social guidelines on people with muscular dystrophy.
Eichinger, Katy; Lewis, Leann; Dilek, Nuran; Higgs, Kiley; Walker, Michaela; Palmer, David; Cooley, John M; Johnson, Nicholas; Tawil, Rabi; Statland, Jeffrey.
  • Eichinger K; Department of Neurology, University of Rochester, Rochester, New York, USA.
  • Lewis L; Department of Neurology, University of Rochester, Rochester, New York, USA.
  • Dilek N; Department of Neurology, University of Rochester, Rochester, New York, USA.
  • Higgs K; Department of Neurology, University of Kansas Medical Center, Kansas City, Kansas, USA.
  • Walker M; Department of Neurology, University of Kansas Medical Center, Kansas City, Kansas, USA.
  • Palmer D; Patient collaborator, University of Kansas Medical Center, Kansas City, Kansas, USA.
  • Cooley JM; Patient collaborator, University of Kansas Medical Center, Kansas City, Kansas, USA.
  • Johnson N; Department of Neurology, Virginia Commonwealth University, Richmond, Virginia, USA.
  • Tawil R; Department of Neurology, University of Rochester, Rochester, New York, USA.
  • Statland J; Department of Neurology, University of Kansas Medical Center, Kansas City, Kansas, USA.
Muscle Nerve ; 64(3): 321-327, 2021 09.
Article in English | MEDLINE | ID: covidwho-1261772
ABSTRACT
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 (<1%), 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 y. Three-quarters of participants who participated in telemedicine visits were satisfied with the encounters; however, most reported a preference for in-person visits.

DISCUSSION:

People with muscular dystrophy reported moderate stress and challenges during the COVID-19 pandemic. Interventions such as exercise and stress-coping strategies, including strategies specific to women or individuals <30 y, may be important. Further investigation is needed into the role of telemedicine in the care of individuals with muscular dystrophy.
Subject(s)
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Full text: Available Collection: International databases Database: MEDLINE Main subject: Surveys and Questionnaires / Self Report / Physical Distancing / Social Interaction / COVID-19 / Muscular Dystrophies Type of study: Cohort study / Experimental Studies / Observational study / Prognostic study / Randomized controlled trials Limits: Adult / Aged / Female / Humans / Male / Middle aged / Young adult Language: English Journal: Muscle Nerve Year: 2021 Document Type: Article Affiliation country: Mus.27349

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Full text: Available Collection: International databases Database: MEDLINE Main subject: Surveys and Questionnaires / Self Report / Physical Distancing / Social Interaction / COVID-19 / Muscular Dystrophies Type of study: Cohort study / Experimental Studies / Observational study / Prognostic study / Randomized controlled trials Limits: Adult / Aged / Female / Humans / Male / Middle aged / Young adult Language: English Journal: Muscle Nerve Year: 2021 Document Type: Article Affiliation country: Mus.27349