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Journal of Neurology
Published in: Journal of Neurology 1/2024

Open Access 20-11-2023 | Pompe Disease | Original Communication

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

Authors: Maudy T. M. Theunissen, Renee M. van den Elsen, Tiffany L. House, Brad Crittenden, Pieter A. van Doorn, Ans T. van der Ploeg, Michelle E. Kruijshaar, Nadine A. M. E. van der Beek

Published in: Journal of Neurology | Issue 1/2024

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Abstract

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.
Appendix
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Metadata
Title
The impact of COVID-19 infection, the pandemic and its associated control measures on patients with Pompe disease
Authors
Maudy T. M. Theunissen
Renee M. van den Elsen
Tiffany L. House
Brad Crittenden
Pieter A. van Doorn
Ans T. van der Ploeg
Michelle E. Kruijshaar
Nadine A. M. E. van der Beek
Publication date
20-11-2023
Publisher
Springer Berlin Heidelberg
Published in
Journal of Neurology / Issue 1/2024
Print ISSN: 0340-5354
Electronic ISSN: 1432-1459
DOI
https://doi.org/10.1007/s00415-023-11999-2

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