Evaluation of cardiac disease knowledge levels, parameters affecting knowledge levels, and medication adherence in adolescents and young adults diagnosed with congenital heart disease

KAYMAZ, EY. Evaluation of Disease Knowledge and Medication Adherence in Adolescents and Young Adults with Congenital Heart Disease and Factors Affecting Level of Knowledge. Hacettepe University Medical Faculty Department of Pediatrics, Thesis in Pediatrics, Ankara, 2024. Nowadays, approximately 90% of children diagnosed with congenital heart diseases (CHD) survive into adulthood (1). Despite recommendations, many do not receive lifelong follow-up care, especially after transitioning from pediatric to adult care (2,3). This lack of follow-up was associated with patients' insufficient knowledge about their disorder during childhood. (2,4) The objective of this study was to assess the level of CHD-related knowledge and compliance of adolescents under our care. The Turkish version of the Leuven Knowledge Questionnaire for Congenital Heart Disease (LKQCHD) was performed and used to evaluate CHD-related knowledge, including treatments, endocarditis, pregnancy risks, appropriate contraceptive methods, and the risk of recurrence. Adequate disease knowledge was defined as ≥80% correct answers. The Medication Adherence Reporting Scale (MARS) was used to assess medication adherence. Within 118 adolescents, only 2 patients demonstrated sufficient knowledge; the mean LKQCHD score was 51.09 out of 100. Older patients (aged ≥18 years) showed greater knowledge compared to their younger peers (p=0.004), and those with high medication adherence also exhibited greater disease knowledge (p=0.026). Endocarditis and reproductive health-related knowledge were the poorest. Our patients' lack of adequate knowledge about their cardiac disease may lead to non-compliance and an increase in comorbidity and mortality in adulthood (2,4–6). Initiating a collaboration between pediatric cardiologists and adolescent health specialists to implement a structured educational program focusing on enhancing the patient's health literacy and compliance may serve as a solution to mitigate the mentioned risks.