{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,12,15]],"date-time":"2025-12-15T14:18:07Z","timestamp":1765808287484,"version":"3.37.3"},"reference-count":29,"publisher":"Springer Science and Business Media LLC","issue":"2","license":[{"start":{"date-parts":[[2024,1,13]],"date-time":"2024-01-13T00:00:00Z","timestamp":1705104000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2024,1,13]],"date-time":"2024-01-13T00:00:00Z","timestamp":1705104000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/501100013428","name":"Stichting Spieren voor Spieren","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100013428","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Acta Neurol Belg"],"published-print":{"date-parts":[[2024,4]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec>\n                <jats:title>Background<\/jats:title>\n                <jats:p>Patients with facioscapulohumeral dystrophy (FSHD) suffer from slowly progressive muscle weakness. Approximately 20% of FSHD patients end up wheelchair-dependent. FSHD patients benefit from physical activity to maintain their muscle strength as much as possible. The impact of the COVID-19 pandemic on the health of FSHD patients was unknown.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Objective<\/jats:title>\n                <jats:p>This study assessed changes in daily care received, perceived psychosocial stress, and worsening of FSHD complaints in 2020. Furthermore, we compared COVID-19 infection incidence and severity of symptoms between FSHD patients and non-FSHD housemates.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p>Three online survey rounds were sent out to all adult participants of the Dutch FSHD registry regarding daily care received, perceived psychosocial stress, COVID-19 infection rate, and COVID-19 symptoms severity. They also included COVID-19-related questions regarding the participants\u2019 housemates, which served as control group.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>Participation rate was 210 (61%), 186 (54%), and 205 (59%) for survey 1, 2, and 3, respectively. Care reduction was reported by 42.7%, 40%, and 28.8% of the participants in the respective surveys. Perceived psychosocial stress increased in 44%, 30%, and 40% of the participants. Compared to the 197 non-FSHD housemates, the 213 FSHD patients reported more possibly COVID-19-related symptoms (27% vs. 39%, <jats:italic>p\u2009=\u2009<\/jats:italic>0.017) of mostly minimal severity (63%). No difference in (possible) COVID-19 infection incidence rates was found (2.0% vs. 2.8%, <jats:italic>p\u2009=\u2009<\/jats:italic>0.527).<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusions<\/jats:title>\n                <jats:p>The COVID-19 pandemic negatively impacted care received and increased perceived psychosocial stress in FSHD patients. However, COVID-19 infection incidence in FSHD patients was similar to their non-FSHD housemates.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1007\/s13760-023-02443-3","type":"journal-article","created":{"date-parts":[[2024,1,13]],"date-time":"2024-01-13T20:01:21Z","timestamp":1705176081000},"page":"559-566","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["Living with facioscapulohumeral muscular dystrophy during the first two COVID-19 outbreaks: a repeated patient survey in the Netherlands"],"prefix":"10.1007","volume":"124","author":[{"given":"Johanna C. 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Deenen has no conflict of interest to report. J. Kools has no conflict of interest to report. A. Greco has no conflict of interest to report. R. Thewissen has no conflict of interest to report. W. van de Put has no conflict of interest to report. A. Lanser has no conflict of interest to report. L. A. B. Joosten received funding from the European Union Horizon 2020 research and innovation programme under Grant Agreement No. 667837 and the IN-CONTROL grant from the Dutch Foundation Netherlands (CVON2012-03 and CVON2018-27). A. L. M. Verbeek is non-profit full professor of Clinical Epidemiology at Radboud University Medical Center, Nijmegen, The Netherlands and no personal compensations or other supports to report. B. G. M. van Engelen receives institutional support from the Radboud University Medical Center, Nijmegen, The Netherlands, grant support from the <i>Global FSH<\/i>, Netherlands Organization for Scientific Research, <i>Prinses Beatrix Spierfonds<\/i>, <i>Spieren voor Spieren<\/i> and the Dutch FSHD Foundation. Consultancy service for Fulcrum, Avidity, Dyne, Arrowhead. All reimbursements were received by the Radboudumc. N. C. Voermans has performed consultancy service for Fulcrum, Avidity, Dyne, and Arrowhead. All reimbursements were received by the Radboudumc.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Conflict of interest"}}]}}