Pompe patients were thought to be at increased risk of severe COVID-19 during the pandemic. It was also assumed lockdown(s) during the pandemic could have an impact on the enzyme replacement therapy (ERT) treatment.
The objective of this survey was to assess the effect of the pandemic on the treatment (ERT), physical and mental health of patients with Pompe disease.
Patients over 16 years old were eligible to participate in the international online survey (September 20, 2022–November 7, 2022). The questionnaire was available in eight languages and consisted of 89 questions.
A total of 342 Pompe patients took part in the survey across 25 countries. 47.6% had one or more COVID-19 infections; most of whom (69.7%) recovered within four weeks while eight patients needed to be admitted to the hospital. 42.2% of patients reported an impact on their overall condition: respiratory and/or mobility. 56% had interruptions in their medical care and 17.2% of the respondents had experienced interruptions of their enzyme replacement therapy. 43.4% of patients reported feeling loneliness and 55.4% reported the pandemic had an impact on their mental health.
Conclusion COVID-19 infection(s) and the pandemic affected the treatment, physical health and mental health of patients with Pompe disease, emphasising the importance of continued patient centred care during a difficult time such as the COVID-19 pandemic.
An article about The impact of COVID‑19 infection, the pandemic and its associated control measures on patients with Pompe disease was published in Neurology. A link to the full article as a pdf is also available.