An Evaluation of Disease Knowledge in Dyads of Parents and Their Adolescent Children With Congenital Heart Disease

Background: Congenital heart disease (CGHD) can be considered a chronic disease for many patients. To adopt a healthy lifestyle and to avoid complications, patients with CGHD and their parents need to have good knowledge of the heart defect and its consequences. Objective: The aims of this study were to evaluate patient and parental knowledge of CGHD and to explore the related factors of their respective disease knowledge. Methods: This study included 116 dyads of adolescents with CGHD (43.1% male adolescents; aged 12-18 years) and one of their parents (79.3% mothers; median age, 46 years). All participants completed the Leuven Knowledge Questionnaire for Congenital Heart Disease, and then we calculated a correct rate score to determine the overall disease knowledge of the respondents. Results: The correct rate score was 38.8% for adolescents with CGHD and 51.4% for parents (t = 7.69; P < .001). The only determinant of knowledge in parents was their educational level (standardized estimate = 6.160, P < .001). In adolescents, knowledge was determined by age (standardized estimate = 2.242, P = .002) and parental knowledge (standardized estimate = 0.311, P < .001). Conclusions: Although parents have significantly greater disease knowledge than their children do, the level of knowledge in both parents and adolescents is suboptimal. Because parents' knowledge influenced their adolescents' knowledge, educational interventions should target both adolescent patients and parents. Transition programs can play a pivotal role in this respect.