Bridging the gap: knowledge deficits and adherence challenges in adolescents with congenital heart disease.

Abstract

Background: Although approximately 90% of children with congenital heart disease (CHD) survive into adulthood, many lack sufficient knowledge about their condition and the need for life-long care. This leads to gaps in follow-up, especially during transition to adulthood, nonadherence to treatment, and increased risk of complications. This study aimed to assess CHD-related knowledge and adherence among adolescents.

Method: The Leuven Knowledge Questionnaire for Congenital Heart Disease (LKQCHD) was translated and validated into Turkish to evaluate CHD-related knowledge, including treatments, endocarditis, pregnancy risks, appropriate contraceptive methods, and the risk of recurrence. Adequate disease knowledge was defined as answering ≥80% of questions correctly. The Medication Adherence Reporting Scale (MARS) was used to assess medication adherence.

Results: Among 118 adolescents, only two had adequate knowledge (≥80% correct), with a mean LKQCHD score of 51.09/100. Older adolescents and those with higher adherence had significantly better knowledge. The poorest knowledge areas were endocarditis and reproductive health.

Conclusion: The insufficient disease knowledge among CHD patients may lead to poor adherence and increased comorbidities, and higher mortality in adulthood. We recommend implementing a structured education and transition program focused on improving health literacy, adherence, and continuity of care, developed collaboratively by cardiologists and adolescent medicine specialists.