Living with facioscapulohumeral muscular dystrophy during the first two COVID-19 outbreaks : a repeated patient survey in the Netherlands
© 2024. The Author(s)..
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.
| Medienart: |
E-Artikel |
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| Erscheinungsjahr: |
2024 |
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| Erschienen: |
2024 |
| Enthalten in: |
Zur Gesamtaufnahme - volume:124 |
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| Enthalten in: |
Acta neurologica Belgica - 124(2024), 2 vom: 13. März, Seite 559-566 |
| Sprache: |
Englisch |
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| Beteiligte Personen: |
Deenen, Johanna C W [VerfasserIn] |
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| Links: |
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| Themen: |
COVID-19 |
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| Anmerkungen: |
Date Completed 27.03.2024 Date Revised 29.03.2024 published: Print-Electronic Citation Status MEDLINE |
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| doi: |
10.1007/s13760-023-02443-3 |
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| funding: |
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| Förderinstitution / Projekttitel: |
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| PPN (Katalog-ID): |
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| 100 | 1 | |a Deenen, Johanna C W |e verfasserin |4 aut | |
| 245 | 1 | 0 | |a Living with facioscapulohumeral muscular dystrophy during the first two COVID-19 outbreaks |b a repeated patient survey in the Netherlands |
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| 500 | |a Date Revised 29.03.2024 | ||
| 500 | |a published: Print-Electronic | ||
| 500 | |a Citation Status MEDLINE | ||
| 520 | |a © 2024. The Author(s). | ||
| 520 | |a 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 | ||
| 520 | |a 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 | ||
| 520 | |a 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 | ||
| 520 | |a 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) | ||
| 520 | |a 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 | ||
| 650 | 4 | |a Journal Article | |
| 650 | 4 | |a COVID-19 | |
| 650 | 4 | |a Epidemiology | |
| 650 | 4 | |a Incidence | |
| 650 | 4 | |a Neuromuscular diseases | |
| 650 | 4 | |a Registries | |
| 650 | 4 | |a Surveys and questionnaires | |
| 700 | 1 | |a Kools, Joost |e verfasserin |4 aut | |
| 700 | 1 | |a Greco, Anna |e verfasserin |4 aut | |
| 700 | 1 | |a Thewissen, Renée |e verfasserin |4 aut | |
| 700 | 1 | |a van de Put, Wiecke |e verfasserin |4 aut | |
| 700 | 1 | |a Lanser, Anke |e verfasserin |4 aut | |
| 700 | 1 | |a Joosten, Leo A B |e verfasserin |4 aut | |
| 700 | 1 | |a Verbeek, Andre L M |e verfasserin |4 aut | |
| 700 | 1 | |a van Engelen, Baziel G M |e verfasserin |4 aut | |
| 700 | 1 | |a Voermans, Nicol C |e verfasserin |4 aut | |
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