Questionnaire survey on the impact of coronavirus disease 2019 on patients with muscular dystrophy

Abstract

The coronavirus disease 2019 (COVID-19) pandemic has severe implications for individuals’ health, daily activities, and economy worldwide. We launched a web-based questionnaire survey on May 11, 2020, to clarify the impact of COVID-19 on patients with muscular dystrophy We inquired about impacts on medical care, home/facility services, daily life, support, health conditions, and infection with severe acute respiratory syndrome coronavirus 2. By the end of February 2021, 663 participants completed the survey. Approximately 28% of patients postponed regular consultations, and 23% of patients who underwent consultations more than once a month used telephone consultations. Two of 97 patients with Duchenne muscular dystrophy taking steroids had reduced their doses. A shortage of ventilator accessories and infection protection equipment occurred following the onset of COVID-19, and this shortage had a significant impact on medical care and infection prevention measures. The lives of most school-aged patients were affected because of school closures and remote learning. More than 20% of patients reported physical or mental complaints. Some patients with mild disease complained of deteriorating motor performance due to decreased rehabilitation and the avoidance of going out. Some patients with advanced-stage disease complained of an increased care burden due to reduced service use and mental stress due to information flooding and restrictions in visiting family or friends. Two patients contracted and recovered from COVID-19. COVID-19 has significantly affected the activities and quality of life of patients with muscular dystrophy. We will continue this survey and analyze the longitudinal changes.