ABSTRACT
Introduction: The coronavirus disease 2019 (COVID-19) pandemic has swept across the world, causing disruption in all aspects of human life. Our aim was to access the psychoemotional impact the pandemic on families of patients with congenital heart diseases (CHD). Methods: This is cross-sectional observational study with patient reported outcomes by online questionnaire. The questionnaire included demographic, medical, social and anxiety (Generalized Anxiety Disorder 7-item;GAD-7) sections and was disseminated via online forums and discussion groups bringing together patients of children with CHD. The statistical analysis was caried out using Wizard Pro 2.0.0beta238. Categorical variables were expressed as percentages, continuous variables as mean ± standard deviation or median (minimum-maximum) dependently on the distribution. Appropriate tests were employed and p<0.05 was considered statistically significant. Results: From 30. April till 6. May 2020, 243 eligible, complete responses were collected. Parents were 34±5 years of age, and S40 Cardiology in the Young: Volume 32 Supplement 1 children's age was 4 (0-18) years. Distribution of CHD is represented in Figure 1A. Figure 1B shows degrees of parental concern regarding various aspects of medical as well as daily matters. A vast majority of guardians agreed that they would feel more secure if they knew when scheduled visits (93%) and procedures (80%) would resume, and if children with CHD are actually in high-risk group (94%) and how to protect them (96%). Interestingly there was no correlation of parental degree of anxiety and child's age (0.272), CHD complexity (p=0.855), whether the child had undergone cardiac surgery or catheterization (p=0.350) or awaits such (p=0.982). Conversely there was a strong correlation between the level of concern and the degree of anxiety (p<0.001) as well as on what would make them feel more secure (p<0.001). Our study design allows for no assumptions on the causal matter of this correlations. Conclusions: The COVID-19 pandemic caused high levels anxiety among parents of chronically ill chirdnen like those with congenital heart diseases. Much of this is correlated to uncertainty regarding both the new disease itself and the resultant reorganization of healthcare system. A strong expectation for clear and timely communication regarding the new risks, safety measures and new plans of providing care was expressed.
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.