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

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.

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.

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.

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.