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Starting a Transition Program

Updated: May 7

Jose Alfonso Silva Sepulveda, MD; Howaida El-Said, MD, PhD; Laith Alshawabkeh, MD, MSCI


Congenital heart defects, also known as Congenital Heart Disease (CHD), result when the heart or blood vessels near the heart do not develop normally before birth. These defects are the most common types of birth defects, effecting 40,000 births per year in the United States.[1,2] The advances in cardiac surgery, intensive care, and noninvasive diagnosis over the last 60 years have improved the survival rate for patients with CHD. It is now expected that at least 90% of babies born with CHD will reach adulthood.[3,4] Since the year 2000, there are more adults than children living with CHD and this population is estimated to be growing at 5% per year.[5] It is also estimated that more than 50% of these patients have moderately or severely complex CHD.[3,4] As of 2010, there were approximately 2.4 million people (1.4 million adults, 1 million children) living with CHD in the United States.[6] However, Mackie et al 2009[7] reported that only 39% of patients with CHD between 18 and 22 years were receiving medical care in an outpatient cardiology setting. This practical limitation and the changes in demographics of patients with CHD has required the development of programs to ensure the smooth transfer of care from pediatric to adult health care settings, with the goal of continuing seamless care and preventing gaps in specialty care.

TABLE 4 Medical Passport

What is a Transition Program?

A transition program is a gradual process of preparing patients to take over the responsibility for management of their own health care needs. Transition is different than transfer of medical care. Transfer is moving patients and their care from a pediatric to an adult environment (which is eventually the goal), whereas transitional care allows patients to learn how to take charge of their health care. The goal of a transition program is to “provide uninterrupted health care that is patient-centered, age- and developmentally-appropriate, flexible, and comprehensive.”[8] In 2011, the AHA published guidelines for transition programs to include age-appropriate education about medical conditions and to promote skills in communication, decision making, self-care, and self-advocacy for patients.[9] The transition process should begin at 12 years of age and should be the responsibility of all health professionals caring for patients with CHD. More important, the timing of starting transition education should be guided by the emotional maturity and developmental level of every patient.[9] Transition education should be a gradual process toward “establishing autonomy, understanding one’s cardiac anatomy and health status, and becoming aware of relevant lifestyle issues.”[10]

To read the full article, please go to the July 2020 Issue of CCT.