Objective: To assess patient knowledge about their congenital cardiovascular disease.
Design: Fifty consecutive patients (25 women) attending the Adult Congenital Heart Disease Clinic, University of Alberta, Edmonton, Alberta, filled out a questionnaire that tested knowledge about their heart defect and endocarditis prophylaxis. The patients ranged in age from 18 to 60 years (mean 25). The most frequent cardiovascular anomalies were obstruction of the left ventricular outflow tract (13), coarctation of the aorta (10), tetralogy of Fallot (six), transposition of the great arteries (five) and Marfan syndrome (four). Patients had been seen on average by three cardiologists (range one to six) and had made an average of seven clinic visits (range one to 22) since the age of 17 years. Eight patients had been followed at other clinics in the past.
Main results: Fifty-four per cent of patients knew their diagnosis. Forty-four per cent could explain the defect in lay language, and another 48% made an attempt. When given a heart diagram, 26% marked their defect correctly and 28% made an attempt. Terms 'endocarditis' and 'antibiotic prophylaxis' were known to 16% and 22% of patients, respectively. Fifty-eight per cent could name at least one situation that carries a risk of 'infection in the heart'.
Conclusion: Adults with congenital heart disease have poor knowledge of their heart defects and the importance of endocarditis and antibiotic prophylaxis. Although time consuming, patient education should be a part of every clinic visit. Repetitive and structured patient education may improve patients' knowledge and, hence, participation in their health care.