COVID-19 related anxiety among parents of children suffering from Duchenne muscular dystrophy

ABSTRACT

Introduction: Duchenne (DMD) and Becker (BMD) muscular dystrophies are genetic disorders affecting skeletal, respiratory, and the cardiac muscles leading to respiratory and/or circulatory failure and death in early adulthood. Therefore, the clinical course of the disease potentially puts these patients in a high-risk group for severe and complicated course of coronavirus disease 2019 (COVID-19). Methods: We present a cross-sectional, observational study based on survey research conducted from 04th July to 6th August 2020. Parents of children with DMD or BMD were invited via online groups and forums to fill in an online questionnaire regarding demographics, medical and social information and assessment of level of anxiety. Only complete surveys were considered eligible. Statistical analysis was performed using Wizard 2beta239 (Evan Miller, Chicago, IL). All data are reported as percentage (n) or mean ± standard deviation or median (range) dependently on the data type and distribution. Appropriate tests were used and p<0.05 was considered statistically significant. Results: Sixty-three respondents, primarily female (82%), aged 39.5 ±7.8 years took part in the study. Majority of responders (51%, n=32) had two children and 35% (22) had one child, 25% (8) of responders had more than one child with BMD/DMD. Mean age of the children with dystrophy was 9.6±5.2 years. Eighty-nine percent of respondents were moderately-to-highly afraid of COVID-19-related complications in their children, 70% feared for their children lives and 72% reported concern due to healthcare system reorganisation (Figure 1). Guardians of younger children (<12 y.o.) were more concerned than the parents of older children (p=0.044). Information about protecting DMD/BMD patients against SARS-CoV-2 infection (94%) and resuming of planned hospitalizations and out-patient visits (95,3%) were indicated as factors much-to-greatly increasing guardians' sense of security. Moderate or severe level of anxiety (as assessed by General Anxiety Disorder -7 Questionnaire) was present in 20% (12) guardians. There was no difference in concern or anxiety level between DMD and BMD groups. Conclusions: COVID-19 pandemic as a new health hazard and simultaneously culprit of reorganisation in health system both resulting in increased anxiety and concern in parents, including fear of offsprings' life. Yielding adequate information by healthcare providers may ease parents' fear.