Illness understanding in adults with congenital heart disease

Adult patients with congenital heart disease need information regarding their clinical diagnosis, medications and side effects, endocarditis prophylaxis, reproductive issues, employment, future surveillance, treatments, and possible reoperations. Accurate understanding of chronic illness in these patients is associated with less distress, less confusion, improved satisfaction with medical care, better compliance with treatment, and a better emotional status, all key factors for good health-related quality of life. The aim of the present study was to assess the level of knowledge that adult patients with congenital heart disease followed in our Center have about their heart condition.

A questionnaire on knowledge about congenital heart disease was sent by mail to 200 adults affected by a cardiac congenital disease chosen randomly from all patients regularly followed in our department.

Patients had good knowledge about the treatment received, the importance of follow-up, the prognosis of their condition, and the possibility of taking part in physical activities. The patients receiving drug treatment were moderately knowledgeable about their treatment. The anatomy of the heart defect, factors contributing to the onset of endocarditis, the impact of smoking and alcohol, and the possible inheritance of the heart condition were poorly understood by the patients. Most of female patients knew that the oral contraceptive pill was the most appropriate method of birth control; most of them were aware that pregnancy would cause additional risks to their health. Multiple logistic analysis showed that four correct answers were related to the age of the patient.

Overall the results indicated that the educational efforts of all the staff (physicians and nurses) have given encouraging results, but there are still significant gaps in knowledge that need more educational work.