ABSTRACT
Introduction: Social distancing, extensive bans on contacts, curfews, and required wearing of masks in public places have -while unavoidable for disease containment purposes -caused major disruptions to everyday life in face of the Coronavirus Disease 2019 (COVID-19) pandemic. The aim of this study was to figure out how the COVID-19 pandemic affects the Health-related Quality of Life (HRQoL) of children and adolescents with CHD, as well as how the parents perceive the HRQoL of their children. Methods: HRQoL was assessed by KINDL® questionnaire during the COVID-19 pandemic and compared to the children's most recent completion of the questionnaire out of the FOOTLOOSE study setting (German-Clinical-Trial-Register-ID: DRKS00018853) at the outpatient department of the German Heart Center Munich (DHM). From May 27th to June 29th 2020, 160 German children with various CHD (15.2 ± 2.5 years, 62 girls) completed this re-assessment of HRQoL. Mean follow-up period was 2.1 ± 1.7 years. Difference between children's self-reported HRQoL and parents' proxy report was calculated with a paired student T-Test, and agreement of the respective ratings with intraclass correlation coefficient (ICC) and their 95% confidence intervals. Results: HRQoL in children with CHD was significantly lower during COVID-19 pandemic compared to before in total KINDL® score (by -2.1 ± 12.3, p=.030), and the subcategories emotional well-being (by -5.4 ± 1.2, p<.001) and friends (by -4.5 ± 1.7, p=.009). Parents of children with CHD rate the HRQoL in total KINDL® score (mean difference: 3.9 ± 1.2, p=.002), and the subcategories family (mean difference: 8.8 ± 1.7 SEE, p<.001) and friends (mean difference: 7.6 ± 2.2 SEE, p<.001) even worse than their children. Only moderate degree of agreement was found between most of the sub-categorical HRQoL assessment of children with CHD and their parents. Conclusions: The COVID-19 pandemic had a negative impact on HRQoL in children and adolescents with CHD and their families. Furthermore, parents rate the HRQoL of their chronically ill children even worse than the children themselves. Specifically, psychological concerns of children with CHD and their families should also be considered by health care providers during the COVID-19 pandemic.