Background: Congenital heart defects (CHD) are prevalent, affecting 1% of live births globally. Despite improved survival rates, adults with CHD face increased risks of psychological distress and neurocognitive deficits. The P-BAHn study (P-BAHn = “Psyche Bei Angeborenen Herzfehlern”, Psyche for congenital heart defects) evaluates the mental health status and psychosocial challenges of German children and adolescents with CHD, focusing on retrospectively assessed COVID-19-related burden and patient-/parent-rated experiences with psychological, psychotherapeutic, or psychiatric treatment (PST). Methods: A cross-sectional, online-based survey was conducted using the National Register for Congenital Heart Defects (NRCHD). The final dataset comprised 1567 respondent-level records from 1310 families, including 992 parent reports and 575 self-reports from children/adolescents aged 6 to <18 years. The survey assessed mental health, emotional well-being, psychosocial status, demographics, medical history, and psychological treatment. Data were analyzed descriptively using chi-square tests and t-tests for exploratory unadjusted group comparisons. In addition, exploratory multivariable logistic regression analyses were performed for selected key outcomes. Results: School-related stress was common in young CHD patients (45.3%) and was associated with older age and female sex (51.5% female vs. 35.6% male) in adjusted analyses. Overall, 17.0% of patients reported having a mental illness, most commonly anxiety (6.8%), eating disorders (5.6%), and depression (4.7%); neither sex nor CHD severity was significantly associated with self-reported mental illness in adjusted analyses. Less good/poor self-rated health was associated with older age and complex CHD in both patient and parent reports. Retrospectively assessed pandemic-related changes were perceived as quite or extremely stressful by 23.9% of patients. High COVID-19-related burden was associated with female sex, whereas CHD severity was not significant after adjustment. Among patients with previous or current PST, patient- and parent-rated treatment benefit varied by patient sex and CHD complexity. Previous/current PST was reported by 25.9% of patients and 23.8% of parents and was associated with older age in both respondent groups and with complex CHD in parent reports. Among patients with previous/current PST, 56.4% reported high perceived support. Conclusions: The P-BAHn study highlights the need for targeted psychosocial support for children and adolescents with CHD, including female patients, those with complex conditions, and patients reporting school- or crisis-related burden. Retrospectively reported pandemic-related burden underscores the importance of integrating crisis-sensitive strategies into psychosocial care frameworks. Longitudinal studies are essential to understand mental health trajectories and to evaluate the sustained patient- and parent-perceived benefit as well as clinical effectiveness of PST use. Enhancing support services and refining intervention models will improve the well-being and quality of life for young CHD patients.
Helm et al. (Thu,) studied this question.