{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,27]],"date-time":"2026-08-27T13:31:08Z","timestamp":1787837468290,"version":"build-2784847793"},"reference-count":20,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2021,6,25]],"date-time":"2021-06-25T00:00:00Z","timestamp":1624579200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Muscle and Nerve"],"published-print":{"date-parts":[[2021,9]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Introduction\/Aims<\/jats:title><jats:p>In this study, we examined the social and health impacts of the coronavirus disease 2019 (COVID\u201019) pandemic and social guidelines on people with muscular dystrophies.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>A prospective de\u2010identified electronic survey was distributed to adults with self\u2010reported facioscapulohumeral muscular dystrophy (FSHD), myotonic dystrophy (DM), and limb\u2010girdle muscular dystrophy (LGMD) enrolled in national registries or with patient advocacy groups.<\/jats:p><jats:p>The COVID\u201019 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.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Respondents (n\u00a0=\u00a0774: 56% FSHD; 35% DM, and 9% LGMD) were mostly women and middle\u2010aged (range 19\u201387\u2009y). Rates of COVID\u201019 infections were low (&lt;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\u00a0=\u00a015.4; range\u00a0=\u00a00\u201335), with higher stress levels reported by women and those under age 30\u2009y. Three\u2010quarters of participants who participated in telemedicine visits were satisfied with the encounters; however, most reported a preference for in\u2010person visits.<\/jats:p><\/jats:sec><jats:sec><jats:title>Discussion<\/jats:title><jats:p>People with muscular dystrophy reported moderate stress and challenges during the COVID\u201019 pandemic. Interventions such as exercise and stress\u2010coping strategies, including strategies specific to women or individuals &lt;30\u2009y, may be important. Further investigation is needed into the role of telemedicine in the care of individuals with muscular dystrophy.<\/jats:p><\/jats:sec>","DOI":"10.1002\/mus.27349","type":"journal-article","created":{"date-parts":[[2021,6,9]],"date-time":"2021-06-09T07:22:07Z","timestamp":1623223327000},"page":"321-327","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":8,"title":["A patient\u2010focused survey to assess the effects of the <scp>COVID<\/scp>\u201019 pandemic and social guidelines on people with muscular dystrophy"],"prefix":"10.1002","volume":"64","author":[{"given":"Katy","family":"Eichinger","sequence":"first","affiliation":[{"name":"Department of Neurology University of Rochester  Rochester New York USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Leann","family":"Lewis","sequence":"additional","affiliation":[{"name":"Department of Neurology University of Rochester  Rochester New York USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nuran","family":"Dilek","sequence":"additional","affiliation":[{"name":"Department of Neurology University of Rochester  Rochester New York USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kiley","family":"Higgs","sequence":"additional","affiliation":[{"name":"Department of Neurology University of Kansas Medical Center  Kansas City Kansas USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michaela","family":"Walker","sequence":"additional","affiliation":[{"name":"Department of Neurology University of Kansas Medical Center  Kansas City Kansas USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"David","family":"Palmer","sequence":"additional","affiliation":[{"name":"Patient collaborator University of Kansas Medical Center  Kansas City Kansas USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"John M.","family":"Cooley","sequence":"additional","affiliation":[{"name":"Patient collaborator University of Kansas Medical Center  Kansas City Kansas USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3917-4257","authenticated-orcid":false,"given":"Nicholas","family":"Johnson","sequence":"additional","affiliation":[{"name":"Department of Neurology Virginia Commonwealth University  Richmond Virginia USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rabi","family":"Tawil","sequence":"additional","affiliation":[{"name":"Department of Neurology University of Rochester  Rochester New York USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0790-5315","authenticated-orcid":false,"given":"Jeffrey","family":"Statland","sequence":"additional","affiliation":[{"name":"Department of Neurology University of Kansas Medical Center  Kansas City Kansas USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2021,6,25]]},"reference":[{"key":"e_1_2_9_2_1","unstructured":"ShatzkesM&RaiK. 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