Educational and behavioral issues in transitioning from pediatric cardiology to adult-centered health care.

It is assumed that when they begin growing up, a child with congenital heart disease will take personal responsibility for his or her care. For this purpose, patients need sufficient knowledge on the heart defect, treatment,and measures to prevent complications. However, empirical studies indicated that the levels of knowledge and understanding of both parents and children with congenital heart disease are poor. Therefore, sound patient education is imperative, particularly when patients are transitioned from pediatric cardiology to adult congenital cardiology. In this respect, the focus of communication shifts from the parent to the young patient; moreover, education should be tailored according to the developmental level of the patient. Issues that should typically be covered by educational programs for adolescents with congenital heart disease are information on the heart defect, treatment, endocarditis, sexuality and reproduction, sports, employability and insurability, and cardiovascular risk factor. International guidelines indicate that advanced practice nurses are key in developing and implementing patient education programs during the transition from pediatric cardiology to adult-centered health care.