The impact of COVID-19 infection, the pandemic and its associated control measures on patients with Pompe disease

Background Patients with Pompe disease, a rare metabolic myopathy, were thought to be at increased risk of severe COVID-19 disease during the pandemic. In addition, the lockdown may have affected their regular treatment. Objective To assess the perceived effect of COVID-19 infection and of the pande...

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Bibliographic Details
Published in:Journal of neurology 2024, Vol.271 (1), p.32-45
Main Authors: Theunissen, Maudy T. M., van den Elsen, Renee M., House, Tiffany L., Crittenden, Brad, van Doorn, Pieter A., van der Ploeg, Ans T., Kruijshaar, Michelle E., van der Beek, Nadine A. M. E.
Format: Article
Language:English
Subjects:
Communicable Disease Control
COVID-19
COVID-19 - complications
Cross-Sectional Studies
Glycogen Storage Disease Type II - complications
Glycogen Storage Disease Type II - epidemiology
Glycogen Storage Disease Type II - therapy
Humans
Infections
Medicine
Medicine & Public Health
Mental health
Myopathy
Neurology
Neuroradiology
Neurosciences
Original Communication
Pandemics
Patients
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Summary:Background Patients with Pompe disease, a rare metabolic myopathy, were thought to be at increased risk of severe COVID-19 disease during the pandemic. In addition, the lockdown may have affected their regular treatment. Objective To assess the perceived effect of COVID-19 infection and of the pandemic on the treatment, and physical and mental health of patients with Pompe disease. Methods Patients with Pompe disease over 16 years of age participated in an international, cross-sectional, online survey (September 20, 2022–November 7, 2022). The questionnaire, available in eight languages, consisted of 89 questions divided into 3 parts: (A) severity of Pompe disease, (B) COVID-19 precautions and infection(s) and (C) effects of the COVID-19 pandemic. Results Among 342 respondents, originating from 25 different countries, 47.6% experienced one or more COVID-19 infections. While most recovered within 4 weeks (69.7%) and only eight patients needed to be admitted to the hospital, 42.2% of patients experienced an impact of the infection on their overall condition, respiratory status and/or mobility status. More severely affected patients took more stringent control measures. The pandemic additionally caused interruptions in medical care in many patients (56.0%) and 17.2% of patients experienced interruptions of enzyme replacement therapy. The pandemic also affected many patients’ disease severity (27.7%), mental health (55.4%) and feeling of loneliness (43.4%). Conclusion COVID-19 infection(s) and the pandemic affected the treatment, physical health and mental health of patients with Pompe disease, emphasizing the importance of continued patient centered care during a difficult time such as the COVID-19 pandemic.
ISSN:0340-5354
1432-1459
DOI:10.1007/s00415-023-11999-2