BACKGROUND Improved survival of children with congenital heart disease (CHD) leads to long-term challenges, like fatigue. Fatigue is a common and disabling symptom in childhood chronic disease with a remarkably similar presentation across diverse disease groups. We hypothesize that fatigue impacts children with CHD similarly. Therefore, we investigated the prevalence of fatigue in children with CHD, its correlation with health-related quality of life (HRQoL) and several cardiologic factors. METHODS Prospective data were obtained from the PROactive cohort study. We examined the prevalence of fatigue in CHD and its correlation with HRQoL in 2- to 18-year-olds. Fatigue and HRQoL were assessed using the PedsQL Multidimensional Fatigue Scale and Generic Core Scales. Cut-off points for fatigue were based on a healthy control population (± 2SD). We assessed correlations between fatigue and disease-specific factors in 8- to 18-year-olds using linear regression analyses. RESULTS We included 259 patients (median age 8.9 (IQR 4.8–13.4), 56% boys). Of all participants, 34% reported fatigue and 16% reported severe fatigue. More fatigue was associated with lower HRQoL (β = 0.6, p < 0.01). Three disease-specific factors were significantly correlated with fatigue: number of cardiac procedures (β = 0.3, p = 0.01), exercise tolerance Watt/kg (β = 0.4, p < 0.01) and VO2/kg (β = 0.3, p = 0.02). These determinants explained 13% of the variance in fatigue. CONCLUSIONS Fatigue is common in children with CHD and its prevalence is comparable with other pediatric chronic diseases. Disease-specific factors explained a minor amount of the variance in fatigue. A biopsychosocial approach should be considered for the identification and management of fatigue in children with CHD.
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