DOĞUMSAL KALP HASTALIĞI TANILI ERGEN VE GENÇ ERİŞKİNLERİN KARDİYAK HASTALIK BİLGİ DÜZEYLERİ, BİLGİ DÜZEYİNE ETKİ EDEN PARAMETRELER VE İLAÇ TEDAVİSİ UYUMUNUN DEĞERLENDİRİLMESİ

Abstract

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.