{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,5]],"date-time":"2026-05-05T16:48:23Z","timestamp":1777999703917,"version":"3.51.4"},"reference-count":9,"publisher":"SAGE Publications","issue":"4","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JND"],"published-print":{"date-parts":[[2022,7,1]]},"abstract":"<jats:p>Introduction: In this study, we examined the long-term social and health impacts of the coronavirus disease 2019 (COVID-19) pandemic on people with muscular dystrophy. Methods: We modified our prior COVID-19 Impact Survey 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 validated 10-item Perceived Stress Scale. The de-identified, electronic survey was distributed to adults with muscular dystrophy via international patient registries and advocacy group websites from February 8, 2021 to March 22, 2021. Results: Respondents (n\u200a=\u200a1243\u200a:\u200a49% Facioscapulohumeral Muscular Dystrophy (FSHD); 43% Myotonic Dystrophy (DM), and 8% Limb-Girdle Muscular Dystrophy (LGMD)) were mostly women and middle-aged (range 18\u201390 years). Rates of COVID-19 infections were low at 8% with zero deaths. Reported recovery times were also short with only 9% reporting a recovery period greater than eight weeks, and 7% requiring hospitalization with one individual requiring a ventilator. Major challenges reported during the pandemic included stress management, particularly for those with LGMD (27%), and wearing a mask (24%). The majority reported a slight worsening of their disease state. Respondents reported moderate stress levels (stress score\u200a=\u200a16.4; range\u200a=\u200a0\u201339), with higher stress levels reported by women and those under age 30 years. Seventy-percent of participants who had telemedicine visits were satisfied with the encounters; however, most reported a preference for in-person visits. Conclusions: People with muscular dystrophy found ways to manage their stress and overcome obstacles 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.<\/jats:p>","DOI":"10.3233\/jnd-220794","type":"journal-article","created":{"date-parts":[[2022,6,14]],"date-time":"2022-06-14T13:01:07Z","timestamp":1655211667000},"page":"517-523","source":"Crossref","is-referenced-by-count":5,"title":["Understanding the Perseverance of the Muscular Dystrophy Community One-Year into the COVID-19 Pandemic"],"prefix":"10.1177","volume":"9","author":[{"given":"Leann","family":"Lewis","sequence":"first","affiliation":[{"name":"Department of Neurology, University of Rochester, Rochester, NY, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Katy","family":"Eichinger","sequence":"additional","affiliation":[{"name":"Department of Neurology, University of Rochester, Rochester, NY, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Nuran","family":"Dilek","sequence":"additional","affiliation":[{"name":"Department of Neurology, University of Rochester, Rochester, NY, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kiley","family":"Higgs","sequence":"additional","affiliation":[{"name":"Department of Neurology, University of Kansas Medical Center, Kansas City, KS, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Michaela","family":"Walker","sequence":"additional","affiliation":[{"name":"Department of Neurology, University of Kansas Medical Center, Kansas City, KS, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"David","family":"Palmer","sequence":"additional","affiliation":[{"name":"Department of Neurology, University of Kansas Medical Center, Kansas City, KS, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"John M.","family":"Cooley","sequence":"additional","affiliation":[{"name":"Department of Neurology, University of Kansas Medical Center, Kansas City, KS, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Nicholas","family":"Johnson","sequence":"additional","affiliation":[{"name":"Department of Neurology, Virginia Commonwealth University, Richmond, VA, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Rabi","family":"Tawil","sequence":"additional","affiliation":[{"name":"Department of Neurology, University of Rochester, Rochester, NY, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jeffrey","family":"Statland","sequence":"additional","affiliation":[{"name":"Department of Neurology, University of Kansas Medical Center, Kansas City, KS, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"179","reference":[{"key":"10.3233\/JND-220794_ref1","doi-asserted-by":"crossref","first-page":"e18810","DOI":"10.2196\/18810","article-title":"Global Telemedicine Implementation and Integration Within Health Systems to Fight the COVID-19 Pandemic: A Call to Action","volume":"6","author":"Ohannessian","year":"2020","journal-title":"JMIR Public Health Surveill"},{"key":"10.3233\/JND-220794_ref2","doi-asserted-by":"crossref","first-page":"1761","DOI":"10.1007\/s13760-020-01514-z","article-title":"Myotonic dystrophy type 1 as a major risk factor for severe COVID-19?","volume":"121","author":"Dhont","year":"2021","journal-title":"Acta Neurol Belg"},{"key":"10.3233\/JND-220794_ref4","doi-asserted-by":"crossref","first-page":"321","DOI":"10.1002\/mus.27349","article-title":"A patient-focused survey to assess the effects of the COVID-19 pandemic and social guidelines on people with muscular dystrophy","volume":"64","author":"Eichinger","year":"2021","journal-title":"Muscle Nerve"},{"issue":"2","key":"10.3233\/JND-220794_ref5","doi-asserted-by":"crossref","first-page":"377","DOI":"10.1016\/j.jbi.2008.08.010","article-title":",Research electronic data capture (REDCap): A metadata-drivenmethodology and workflow process for providing translationalresearch informatics support","volume":"42","author":"Harris","year":"2009","journal-title":"J Biomed Inform"},{"key":"10.3233\/JND-220794_ref6","doi-asserted-by":"crossref","first-page":"385","DOI":"10.2307\/2136404","article-title":"A global measure of perceived stress","volume":"24","author":"Cohen","year":"1983","journal-title":"J Health Soc Behav"},{"key":"10.3233\/JND-220794_ref7","unstructured":"Hinkle DE , Wiersma W , Jurs SG . Applied Statistics for the Behavioral Sciences. 5th ed. Houghton Mifflin: Boston, 2003."},{"key":"10.3233\/JND-220794_ref9","doi-asserted-by":"crossref","first-page":"172","DOI":"10.1093\/ehjqcco\/qcaa081","article-title":"Cardiovascular comorbidities as predictors for severe COVID-19 infection or death","volume":"7","author":"Phelps","year":"2021","journal-title":"Eur Heart J Qual Care Clin Outcomes"},{"key":"10.3233\/JND-220794_ref10","doi-asserted-by":"crossref","unstructured":"Mueller AL , McNamara MS , Sinclair DA . Why does COVID-19 disproportionately affect older people? Aging (Albany NY) 2020 12, 9959\u201381.","DOI":"10.18632\/aging.103344"},{"key":"10.3233\/JND-220794_ref11","doi-asserted-by":"crossref","first-page":"e2134147","DOI":"10.1001\/jamanetworkopen.2021.34147","article-title":"Disparities in COVID-19 Outcomes by Race, Ethnicity, and Socioeconomic Status: A Systematic-Review and Meta-analysis","volume":"4","author":"Magesh","year":"2134","journal-title":"JAMA Network Open"}],"container-title":["Journal of Neuromuscular Diseases"],"original-title":[],"link":[{"URL":"https:\/\/content.iospress.com\/download?id=10.3233\/JND-220794","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,4,29]],"date-time":"2026-04-29T23:49:59Z","timestamp":1777506599000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/full\/10.3233\/JND-220794"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,7,1]]},"references-count":9,"journal-issue":{"issue":"4"},"URL":"https:\/\/doi.org\/10.3233\/jnd-220794","relation":{},"ISSN":["2214-3599","2214-3602"],"issn-type":[{"value":"2214-3599","type":"print"},{"value":"2214-3602","type":"electronic"}],"subject":[],"published":{"date-parts":[[2022,7,1]]}}}