دورية أكاديمية
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Living with facioscapulohumeral muscular dystrophy during the first two COVID-19 outbreaks: a repeated patient survey in the Netherlands.

التفاصيل البيبلوغرافية
العنوان: Living with facioscapulohumeral muscular dystrophy during the first two COVID-19 outbreaks: a repeated patient survey in the Netherlands.
المؤلفون: Deenen JCW; Department of Neurology, Donders Institute for Brain, Cognition and Behaviour, Radboud University Medical Center, P. O. Box 9101, 6500 HB, Nijmegen, The Netherlands.; Department for Health Evidence, Radboud University Medical Center, P. O. Box 9101, 6500 HB, Nijmegen, The Netherlands., Kools J; Department of Neurology, Donders Institute for Brain, Cognition and Behaviour, Radboud University Medical Center, P. O. Box 9101, 6500 HB, Nijmegen, The Netherlands., Greco A; Department of Neurology, Donders Institute for Brain, Cognition and Behaviour, Radboud University Medical Center, P. O. Box 9101, 6500 HB, Nijmegen, The Netherlands.; Department of Internal Medicine, Radboud University Medical Center, P. O. Box 9101, 6500 HB, Nijmegen, The Netherlands., Thewissen R; Department of Neurology, Donders Institute for Brain, Cognition and Behaviour, Radboud University Medical Center, P. O. Box 9101, 6500 HB, Nijmegen, The Netherlands., van de Put W; Department of Neurology, Donders Institute for Brain, Cognition and Behaviour, Radboud University Medical Center, P. O. Box 9101, 6500 HB, Nijmegen, The Netherlands., Lanser A; Patient Representative and Chairman FSHD Advocacy Group, Patient Organization for Muscular Disease Spierziekten Nederland, Lt. Gen. van Heutszlaan 6, 3743 JN, Baarn, The Netherlands., Joosten LAB; Department of Internal Medicine, Radboud University Medical Center, P. O. Box 9101, 6500 HB, Nijmegen, The Netherlands.; Department of Medical Genetics, Iuliu Hatieganu University of Medicine and Pharmacy, Strada Victor Babeș 8, 400347, Cluj-Napoca, Romania., Verbeek ALM; Department for Health Evidence, Radboud University Medical Center, P. O. Box 9101, 6500 HB, Nijmegen, The Netherlands., van Engelen BGM; Department of Neurology, Donders Institute for Brain, Cognition and Behaviour, Radboud University Medical Center, P. O. Box 9101, 6500 HB, Nijmegen, The Netherlands., Voermans NC; Department of Neurology, Donders Institute for Brain, Cognition and Behaviour, Radboud University Medical Center, P. O. Box 9101, 6500 HB, Nijmegen, The Netherlands. nicol.voermans@radboudumc.nl.
المصدر: Acta neurologica Belgica [Acta Neurol Belg] 2024 Apr; Vol. 124 (2), pp. 559-566. Date of Electronic Publication: 2024 Jan 13.
نوع المنشور: Journal Article
اللغة: English
بيانات الدورية: Publisher: Springer Country of Publication: Italy NLM ID: 0247035 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 2240-2993 (Electronic) Linking ISSN: 03009009 NLM ISO Abbreviation: Acta Neurol Belg Subsets: MEDLINE
أسماء مطبوعة: Publication: 2012- : Milan : Springer
Original Publication: 1970-2011: Bruxelles : Acta Medica Belgica,
مواضيع طبية MeSH: Muscular Dystrophy, Facioscapulohumeral*/epidemiology , Muscular Dystrophy, Facioscapulohumeral*/diagnosis , Muscular Dystrophy, Facioscapulohumeral*/psychology , COVID-19*/epidemiology, Adult ; Humans ; Netherlands/epidemiology ; Pandemics ; Surveys and Questionnaires
مستخلص: Background: 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.
Objective: 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.
Methods: 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' housemates, which served as control group.
Results: 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%, p = 0.017) of mostly minimal severity (63%). No difference in (possible) COVID-19 infection incidence rates was found (2.0% vs. 2.8%, p = 0.527).
Conclusions: 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.
(© 2024. The Author(s).)
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فهرسة مساهمة: Keywords: COVID-19; Epidemiology; Incidence; Neuromuscular diseases; Registries; Surveys and questionnaires
تواريخ الأحداث: Date Created: 20240113 Date Completed: 20240327 Latest Revision: 20240329
رمز التحديث: 20240329
مُعرف محوري في PubMed: PMC10965598
DOI: 10.1007/s13760-023-02443-3
PMID: 38218752
قاعدة البيانات: MEDLINE
الوصف
تدمد:2240-2993
DOI:10.1007/s13760-023-02443-3