The COVID-19 Pandemic and Its Influence on Patients With Myotonic Dystrophy Type 1: Lessons Learned

Vera E A Kleinveld1, Johanna E Bruijnes2, Samuel Labrecque1

  • 1Department of Neurology, Medical University of Innsbruck, Innsbruck, Austria.

Brain and Behavior
|November 18, 2024
PubMed

Insights

Myotonic dystrophy type 1 (DM1) patients had a lower COVID-19 prevalence but higher hospitalization rates. Pandemic management strategies did not impact DM1 disease course, suggesting their reusability.

Area of Science:

  • Neurology
  • Infectious Diseases
  • Public Health

Background:

  • Myotonic dystrophy type 1 (DM1) patients have cardiopulmonary symptoms, increasing severe COVID-19 risk.
  • The COVID-19 pandemic's impact on DM1 patients requires investigation for management strategies.

Purpose of the Study:

  • To assess the effect of the COVID-19 pandemic on DM1 patients.
  • To inform management strategies for DM1 patients during pandemics.

Main Methods:

  • Retrieved COVID-19 infection data from 195 DM1 patients in the MYODRAFT database.
  • Administered a questionnaire on COVID-19 symptoms, well-being, and care to 82 patients/proxies.
  • Compared pandemic data with prepandemic data.

Main Results:

  • COVID-19 prevalence in DM1 patients (9.2%) was lower than the Dutch population (11.5%).
  • Hospitalization rates for COVID-19 in DM1 patients (22.2%) were higher than the general population (3.6%).
  • Two DM1 patients died from COVID-19; canceled appointments were frequent. Patient-reported physical functioning remained stable, but proxies noted well-being decline.

Conclusions:

  • DM1 patients face higher risks for severe COVID-19 outcomes despite similar infection prevalence.
  • Pandemic management strategies did not negatively affect DM1 disease progression.
  • Existing strategies can be reapplied in similar future public health crises.
Abstract

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