Children with congenital heart disease (CHD) may be at increased risk for neurodevelopmental impairments. Long-term behavioral profiles and respective risk factors are less frequently described. The aim of this study was to evaluate multidimensional behavioral outcomes and associated medical, psychological, and social risk factors in children with complex CHD. At 10-years of age, 125 children with CHD were assessed for general behavioral difficulties, attention deficit hyperactivity disorder (ADHD)-related behavior, and social interaction problems and were compared to normative data. Medical and cardiac factors, IQ, maternal mental health at 4 years of age and parental socioeconomic status were tested as predictors for all behavioral outcomes. Children with CHD showed no significant differences in general behavioral difficulties. However, increased ADHD-related symptoms (p < 0.05) and difficulties in social interaction (p < 0.05) were observed. In 23% of the children, a combination of ADHD-related symptoms and social interaction problems was reported by parents. In multivariate analyses, IQ (p < 0.01) and maternal mental health (p < 0.03) at 4 years of age were found to be predictive for all behavioral outcomes at 10 years while medical and cardiac risk factors were not. Our findings reveal significant difficulties in ADHD-related symptoms and social interaction problems with a significant comorbidity. Behavioral difficulties were not detected with a screening tool but with disorder-specific questionnaires. Furthermore, we demonstrate the importance of maternal mental health during early childhood on later behavioral outcomes of children with CHD. This underlines the importance of identifying and supporting parents with mental health issues at an early stage in order to support the family and improve the child's neurodevelopment.

Background Children with congenital heart disease (CHD) are at risk for neurodevelopmental deficits. This study aimed to investigate the impact of cognitive deficits on educational outcome and participation in leisure activities. Methods A prospective cohort of 134 children with CHD who underwent cardiopulmonary bypass surgery (CPB) was examined at 10 years of age. IQ was assessed with the WISC-IV and executive functions with the BRIEF (parent- and teacher-report). Parents reported on type and level of education and educational support, and leisure activity participation. Ordinal regression analyses assessed the association between cognitive deficits and educational outcome and participation. Results Total IQ (P = 0.023), working memory (P < 0.001), processing speed (P = 0.008), and teacher-reported metacognition (P = 0.022) were lower than norms. Regular school was attended by 82.4% of children with CHD compared to 97% of the general Swiss population (P < 0.001). Seventy-five percent of children participated in leisure activities. Lower total IQ and teacher-rated global executive functions were associated with more educational support and lower IQ was associated with less participation. Conclusion As school-aged children with CHD experience cognitive deficits, follow-up is required to provide optimal support with regard to educational outcome and participation in leisure activities. Impact Contemporary cohorts of children with congenital heart disease undergoing cardiopulmonary bypass surgery remain at increased risk for cognitive deficits. Cognitive deficits affect educational outcome and leisure activities. These findings underline the importance of early detection of cognitive deficits and recommend support with respect to cognitive functioning.

Background: Children with CHD are at increased risk for neurodevelopmental impairments. There is little information on long-term motor function and its association with behaviour. Aims: To assess motor function and behaviour in a cohort of 10-year-old children with CHD after cardiopulmonary bypass surgery. Methods: Motor performance and movement quality were examined in 129 children with CHD using the Zurich Neuromotor Assessment providing four timed and one qualitative component, and a total timed motor score was created based on the four timed components. The Beery Test of Visual–Motor Integration and the Strengths and Difficulties Questionnaire were administered. Results: All Zurich Neuromotor Assessment motor tasks were below normative values (all p ≤ 0.001), and the prevalence of poor motor performance (≤10th percentile) ranged from 22.2% to 61.3% in the different components. Visuomotor integration and motor coordination were poorer compared to norms (all p ≤ 0.001). 14% of all analysed children had motor therapy at the age of 10 years. Children with a total motor score ≤10th percentile showed more internalising (p = 0.002) and externalising (p = 0.028) behavioural problems. Conclusions: School-aged children with CHD show impairments in a variety of motor domains which are related to behavioural problems. Our findings emphasise that motor problems can persist into school-age and require detailed assessment and support.

Each author has met the Pediatric research authorship requirementsFinancial support: Swiss Heart Foundation, Else Kröner-Fresenius Foundation. The sponsors had no influence on study design, the collection, analysis, and interpretation of data, the writing of the report, or the decision to submit the paper for publication.

Zusammenfassung. Zwei Fallbeispiele illustrieren die Bedeutung einer sorgfältigen diagnostischen Vorgehensweise bei der Frage nach Vorliegen einer Aufmerksamkeitsdefizit-/Hyperaktivitätsstörung (ADHS). Entwicklungsstörungen und insbesondere dissoziierte Entwicklungsprofile können zu unspezifischen Verhaltensauffälligkeiten wie Unaufmerksamkeit oder Hyperaktivität führen. Die betroffenen Kinder sind besonders dann auffällig, wenn Anforderungen ihren Problembereich tangieren, also beispielsweise ein dyslektisches Kind beim Lesen. Die Symptome, welche dieses Kind zeigt, können durchaus mit denen einer ADHS verwechselt werden. Nur mittels einer umfassenden Untersuchung können Entwicklungsprobleme festgestellt und therapeutisch gezielt angegangen werden. Ohne ein solches Vorgehen besteht die Gefahr, dass die tatsächlich zugrundeliegenden Ursachen der Verhaltensauffälligkeiten übersehen und als ADHS missinterpretiert werden. Aber auch wenn eine ADHS besteht, ist eine sorgfältige Abklärung wichtig, um allfällige Komorbiditäten diagnostizieren und therapieren zu können. Eine Verstärkung von Verhaltensauffälligkeiten im schulischen Kontext mit den erhöhten sozialen und kognitiven Anforderungen passt dann zur Diagnose einer ADHS. Nicht selten sind Verlaufskontrollen nötig, um Diagnosen im Verlauf zu re-evaluieren und gegebenenfalls zu revidieren.