A Parent-Focused Survey to Assess the Effects of the COVID-19 Pandemic on Patients With Duchenne Muscular Dystrophy

Abstract

The aim of this study was to evaluate the effect of the Coronavirus Disease (COVID-19) on the use of health and rehabilitation services, physical and general health conditions of individuals with Duchenne Muscular Dystrophy (DMD) from the perspective of parents. A questionnaire consisting of 35 questions was created by the research team. The data were obtained from the parents/primary caregivers of individuals whose diagnoses were confirmed by genetic testing and accessed online via the DMD Families Association. It was reported that 5.5% of the 272 individuals with DMD (age: 10.43±6.42 years) included in the study were infected with COVID-19. It was observed that the major problems encountered during the pandemic were obtaining health services (81%) and stress management (42%). More than half of the individuals were found to be adversely affected in general health (52%), mobility (56%), range of motion (54%), mood (66%), and social dialogs (62%). Furthermore, it was determined that 71% of the individuals took a break from the center where they received outpatient physiotherapy for 3 months or more, and only 6% could receive telerehabilitation service and the level of satisfaction was relatively moderate (10-point visual analog scale: 6.3±2.6). The parents reported that the health care utilization and physical-general health status of individuals with DMD were significantly adversely affected during the COVID-19 pandemic. The present study has an exploratory feature regarding the problems faced by individuals with DMD during the COVID-19 pandemic. Therefore, we think that it will guide future studies in preventing the negative effects of situations such as pandemics or natural disasters.