What do adult patients with congenital heart disease know about their disease, treatment, and prevention of complications? A call for structured patient education

Objective-To assess how much adults with congenital heart disease understan d about their heart defect, its treatment, and the preventive measures nece ssary to avoid complications. Design-Descriptive, cross sectional study. Setting-Adult congenital heart disease programme in one tertiary care centr e in Belgium. Patients-62 adults with congenital heart disease (47 men; 15 women), median age 23 years. Main outcome measures-Patients' knowledge was assessed during an outpatient visit using the Leuven knowledge questionnaire for congenital heart diseas es, a 33 item instrument developed for this study. Results-Patients had adequate knowledge (> 80% correct answers) about their treatment, frequency of follow up, dental practices, occupational choices, appropriateness of oral contraceptives, and the risks of pregnancy. Knowle dge about the name and anatomy of the heart defect, the possibility of recu rrent episodes of endocarditis during their lifetime, and the appropriatene ss of different physical activities was moderate (50-80%, correct answers). There was poor understanding (< 50% correct answers) about the reasons for follow up, the symptoms of deterioration of the heart disease, the definit ion, characteristics, and risk factors of endocarditis, the impact of smoki ng and alcohol on the heart disease, the hereditary nature of the condition , and the suitability of intrauterine devices as contraceptives. Conclusions-Adults with congenital heart disease have important gaps in the ir knowledge about their condition. The results of this study can be used a s a basis for developing or optimising structured educational interventions to enhance patients' health behaviour.