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

There is consensus regarding the importance of a thoughtful and coordinated transition process to support adolescents and young adults with congenital heart disease (CHD) as they take increasing responsibility for their health care management and transfer from pediatric to adult care. Few CHD teams, however, offer formal transition programs. This paper describes the development of the Toronto CHD Transition Task Force, which is an interdisciplinary group of pediatric and adult providers committed to undertaking practical strategies to optimize the transition and transfer of adolescents and young adults with CHD. Task Force initiatives are described in three categories: (1) patient and family education, (2) preparation for transfer, and (3) coordinated transfer of care. It is hope that the experiences and resources of this Task Force will assist other programs interested in developing or expanding their transition services.

Adults with congenital heart disease (CHD) have unique medical and psychosocial needs. They require lifelong cardiac surveillance from medical providers with training and expertise in the care of adults with CHD. Patients with CHD must recognize the importance of ongoing surveillance and must not be lost to care in childhood, adolescence, or adulthood. This can be accomplished with the implementation of a comprehensive transition program with the collaboration of patients, parents, and both pediatric and adult health care providers. Finally, consideration of the “whole” patient demands recognition of the unique medical and psychosocial challenges of adults with CHD.

Adolescents with congenital heart disease (CHD) must take responsibility for their life and care. This requires that they have sufficient knowledge about their heart disease, treatment, and preventive measures. Thus, CHD-related education should be directed to adolescents. Research on adolescents' understanding and knowledge of CHD is limited. It is unknown what adolescents with CHD know about their heart defect, treatment, and preventive measures necessary to avoid complications. We addressed these questions in a descriptive cross-sectional study of 91 adolescents with CHD (53% males; median age 17 years). In the present study, we assessed the subjects' knowledge of CHD using the Leuven Knowledge Questionnaire for Congenital Heart Disease. The results showed that the patients had adequate knowledge (>80% correct answers) about the need for regular follow-up, their required diet, past treatment, and dental practices. They had moderate knowledge (50% to 80% correct answers) about the frequency of follow-up, occupational choices, medication regimen, and sexual activities. However, the patients had poor knowledge (<50% correct answers) of the name of their heart defect; the reasons for follow-up; the effects of competitive sports; the symptoms that reflect deterioration of their heart disease; the definition, characteristics, and risk factors of endocarditis; the possibility of recurrent episodes of endocarditis during their lifetime; the effect of smoking and alcohol on their heart disease; the hereditary nature of their condition; the suitability of intrauterine devices as contraceptives; the appropriateness of oral contraceptives; and the risks of pregnancy. In conclusion, the results of the present study have showed that the level of knowledge of adolescents with CHD has significant gaps.