How do orphan disease patients live during the pandemic of Omicron variant? A nationwide survey of spinal muscular atrophy patients in China
Copyright © 2023 The Authors. Published by Elsevier Ltd.. All rights reserved..
OBJECTIVES: To investigate the challenges of patients with spinal muscular atrophy (SMA) during the Omicron variant COVID-19 pandemic.
DESIGN: A cross-sectional survey was conducted in China from January 02, 2023, to January 12, 2023, using a questionnaire that covered three aspects: (1) Demographic information; (2) SMA-related information; and (3) COVID-19-related information. We recruited patients with SMA from 33 provinces. The prevalence, course, and clinical manifestations of COVID-19 were calculated. The relationships between independent and outcome variables were investigated.
RESULTS: In total, 677 patients (male: 349; female: 328) were included in this study (average age = 11.40 years); 534 (78.88%) suffered from COVID-19. The most common symptoms were fever (95.51%), cough (57.87%), and sputum (49.44%). Of the infected patients, 91.57% recovered with at-home care, and 8.43% were hospitalized; 1.31% were admitted to the intensive care unit (ICU). A positive correlation was observed between the SMA severity and hospitalization rate. The ICU stay rate in patients with SMA type I was significantly higher than that in other SMA types.
CONCLUSION: This is the first large sample survey to timely reveal the living situation of patients with SMA during the COVID-19 pandemic's Omicron variant. Patients with SMA type I should be paid more attention in terms of hospitalization and ICU stay.
| Medienart: |
E-Artikel |
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| Erscheinungsjahr: |
2023 |
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| Erschienen: |
2023 |
| Enthalten in: |
Zur Gesamtaufnahme - volume:134 |
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| Enthalten in: |
International journal of infectious diseases : IJID : official publication of the International Society for Infectious Diseases - 134(2023) vom: 01. Sept., Seite 187-194 |
| Sprache: |
Englisch |
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| Beteiligte Personen: |
Jiao, Yang [VerfasserIn] |
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| Links: |
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| Themen: |
COVID-19 pandemic |
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| Anmerkungen: |
Date Completed 09.08.2023 Date Revised 10.08.2023 published: Print-Electronic Citation Status MEDLINE |
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| doi: |
10.1016/j.ijid.2023.06.015 |
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| funding: |
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| Förderinstitution / Projekttitel: |
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| PPN (Katalog-ID): |
NLM358542847 |
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| 245 | 1 | 0 | |a How do orphan disease patients live during the pandemic of Omicron variant? A nationwide survey of spinal muscular atrophy patients in China |
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| 500 | |a published: Print-Electronic | ||
| 500 | |a Citation Status MEDLINE | ||
| 520 | |a Copyright © 2023 The Authors. Published by Elsevier Ltd.. All rights reserved. | ||
| 520 | |a OBJECTIVES: To investigate the challenges of patients with spinal muscular atrophy (SMA) during the Omicron variant COVID-19 pandemic | ||
| 520 | |a DESIGN: A cross-sectional survey was conducted in China from January 02, 2023, to January 12, 2023, using a questionnaire that covered three aspects: (1) Demographic information; (2) SMA-related information; and (3) COVID-19-related information. We recruited patients with SMA from 33 provinces. The prevalence, course, and clinical manifestations of COVID-19 were calculated. The relationships between independent and outcome variables were investigated | ||
| 520 | |a RESULTS: In total, 677 patients (male: 349; female: 328) were included in this study (average age = 11.40 years); 534 (78.88%) suffered from COVID-19. The most common symptoms were fever (95.51%), cough (57.87%), and sputum (49.44%). Of the infected patients, 91.57% recovered with at-home care, and 8.43% were hospitalized; 1.31% were admitted to the intensive care unit (ICU). A positive correlation was observed between the SMA severity and hospitalization rate. The ICU stay rate in patients with SMA type I was significantly higher than that in other SMA types | ||
| 520 | |a CONCLUSION: This is the first large sample survey to timely reveal the living situation of patients with SMA during the COVID-19 pandemic's Omicron variant. Patients with SMA type I should be paid more attention in terms of hospitalization and ICU stay | ||
| 650 | 4 | |a Journal Article | |
| 650 | 4 | |a COVID-19 pandemic | |
| 650 | 4 | |a Orphan disease | |
| 650 | 4 | |a SARS-CoV-2 Omicron variant | |
| 650 | 4 | |a Spinal muscular atrophy | |
| 650 | 4 | |a Vaccination | |
| 700 | 1 | |a Zhao, Junduo |e verfasserin |4 aut | |
| 700 | 1 | |a Wang, Zhen |e verfasserin |4 aut | |
| 700 | 1 | |a Chen, Xin |e verfasserin |4 aut | |
| 700 | 1 | |a Cai, Haoyu |e verfasserin |4 aut | |
| 700 | 1 | |a Huang, Xu'an |e verfasserin |4 aut | |
| 700 | 1 | |a Sun, Peiyu |e verfasserin |4 aut | |
| 700 | 1 | |a Shen, Jiayi |e verfasserin |4 aut | |
| 700 | 1 | |a Song, Fang |e verfasserin |4 aut | |
| 700 | 1 | |a Xiong, Hui |e verfasserin |4 aut | |
| 700 | 1 | |a Dai, Yi |e verfasserin |4 aut | |
| 700 | 1 | |a Chen, Weiyun |e verfasserin |4 aut | |
| 700 | 1 | |a Shen, Jianxiong |e verfasserin |4 aut | |
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