日本小児循環器学会雑誌 Pediatric Cardiology and Cardiac Surgery

Background: For the transition to adult health care, it is important that children with congenital heart disease (CHD) understand their disease. However, disease understanding in children has not been well documented. This study evaluated the ability of children with CHD to understand their disease according to patient age and disease severity.

Methods: A total of 28 children in grades 1–9 who received treatment at a pediatric cardiology department participated in semi-structured interviews.

Results: No differences according to age or severity were observed in children’s knowledge of “limitation of exercise,” “medication frequency,” “medication effect,” and “prevention of infective endocarditis.” However, understanding of “disease name,” “medication name,” “reason for consultation,” “next consultation date,” and “self-management of medication” increased with age. “Cardiac defect” was specifically understood best by patients with mild symptoms.

Conclusion: The results suggest that care providers should explain the disease to children with CHD while considering cognitive development and disease complexity.