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

INTRODUCTION: Myotonic dystrophy type 1 (DM1) patients might represent a high-risk population for severe COVID-19 disease, as cardiopulmonary symptoms are part of the clinical spectrum of DM1. The COVID-19 pandemic may have impacted DM1 patients. We aimed to determine the effect of the COVID-19 pandemic on DM1 patients to guide management strategies in possible future pandemics. METHODS: Data on the presence of a COVID-19 infection were retrieved from 195 DM1 patients in the MYODRAFT database. Between August 12 and October 4, 2021, 82 patients and proxies filled out a questionnaire on COVID-19 symptoms, well-being, and organization of care. Data were compared to prepandemic data. RESULTS: A total of 18 patients had COVID-19 (13 confirmed, 5 probable infections). The prevalence of COVID-19 in our cohort was 9.2%, which was lower than in the Dutch population (11.5%). Four patients (22.2%) were hospitalized due to a COVID-19 infection, which was higher than in the Dutch population (3.6%). Two infected patients died. A high rate of canceled appointments was reported. Patients reported no change in physical functioning during the pandemic, whereas proxies reported a deterioration in mental and physical well-being of patients. CONCLUSIONS: The prevalence of COVID-19 infections was not higher in DM1 patients than in the general population, but DM1 patients are more susceptible to complicated disease when infected. Longitudinal data on patient-reported physical functioning suggest that the COVID-19 pandemic and the pandemic management strategies implemented did not influence the course of disease in DM1 patients, and similar strategies can be re-used in comparable situations.