Long-term Psychosocial Outcomes in Children and Adolescents with Congenital Heart Disease, and in Their Parents: Rotterdam Follow-up Studies

[Background] This review describes the main findings of two follow-up studies into long-term psychosocial outcomes in children and adolescents with congenital heart disease (ConHD) and their parents. [Methods] For both studies, all consecutive patients who underwent their first open-heart surgery or invasive treatment for ConHD (study 1: surgeries performed between 1968 and 1980; study 2: surgeries performed between 1990 and 1995) at the Erasmus Medical Centre Rotterdam, the Netherlands, and who were younger than 15 years of age at the time of surgery, were eligible. The first study was performed between 1989 and 1991, the second between 2003 and 2005. [Results] The first study demonstrated that 10-17-year-old ConHD children and adolescents who underwent surgical "correction" for ConHD before 1980 showed significantly higher levels of behavioral/emotional problems compared to normative groups, both according to parents' reports (N=144) and self-reports (N=179). The second, more recent study was executed in 7-17-year-old patients (N=124). Despite improvements in medical treatment over the years, patients from this more recent study, still showed higher levels of behavioral/emotional problems and also a poorer health-related quality of life (HRQoL), compared to reference groups. Parents of patients showed favorable outcomes on psychosocial well being (N=100 mothers, 61 fathers) and coping. Overall, in both studies, no clear relationships were found between cardiac diagnoses and psychosocial outcomes. [Conclusion and Discussion] Considering the poorer behavioral/emotional functioning and poorer HRQoL of these children and adolescents with ConHD, we recommend early screening to identify children who are at risk.