Reduction in health-related quality of life during coronavirus disease 2019 pandemic in children with congenital heart disease – Findings from self and proxy report

Objective: The aim of this study was to determine how the coronavirus disease 2019 (COVID-19) pandemic affects the health-related quality of life (HRQoL) of children and adolescents with congenital heart disease (CHD), as well as how the parents perceive the HRQoL of their children. Patients and Methods: HRQoL was assessed by the KINDL® questionnaire during the COVID-19 pandemic and compared to recent questionnaire data of children of the Functional Outcome in children and adolescents with congenital heart disease (FOOTLOOSE) study. From May 27 to June 29, 2020, 160 children with various CHD (15.2 ± 2.5 years, 62 girls, age range: 10–18 years) completed this re-assessment of HRQoL. Results: HRQoL in children with CHD was significantly lower during the COVID-19 pandemic compared to before in total KINDL® score (by −2.1 ± 12.3, P = 0.030), and the subscales emotional well-being (by −5.4 ± 1.2, P < 0.001) and friends (by −4.5 ± 1.7, P = 0.009). Parents of children with CHD rate the HRQoL in total KINDL® score (mean difference: 3.9 ± 1.2, P = 0.002), and the subscales family (mean difference: 8.8 ± 1.7 standard estimate error [SEE], P < 0.001) and friends (mean difference: 7.6 ± 2.2 SEE, P < 0.001) 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. The psychological concerns of children with CHD and their families need special consideration by health-care providers during the COVID-19 pandemic.