Creating an Adult Congenital Cardiology Transition of Care Program at a Tertiary Care Facility

Due to advances in surgical and medical management there is a rapidly growing population of adolescent and young adult survivors of congenital heart disease (CHD). Recent data reveals there are more adults than children with CHD. These CHD survivors are at risk of both cardiac and non-cardiac morbidity and premature mortality. The majority do not undergo proper transition and experience lapses in care (Mackie et al., 2016; Reid et al., 2004; Wray et al., 2013). These lapses in care place them at a higher risk of late cardiac complications (Yeung et al., 2008). In 2017 at our institution there were 3,291 unique CHD patient visits for individual's ages of 12-18. In this same timeframe only 43 patients between 18-22 years old transferred care to an adult congenital cardiologist (less than 2%) supporting the need for a formal transition program. A formal needs assessment was completed of the pediatric cardiology providers supporting the creation of a formal transition program. Creation of the transition program was based upon national guidelines as well as the gottranstion.org framework. Our comprehensive transition plan is multifaceted and includes an online database using REDCap software for tracking of transition activities, ongoing transition assessments performed to assess individual patient transition readiness and the ability to tailor education to patients' individual needs. In addition a medical health passport was incorporated in the transition plan to summarize pertinent medical information for other health care providers. Finally, a transfer of care checklist was created to ensure proper hand-off from the pediatric to adult provider. A health care transition process measurement tool developed by gottransition.org was utilized to evaluate the newly created transition plan. The objective tool is scored from 0-100 and utilizes three main categories including implementation in practice, youth/family feedback and leadership, and dissemination in practice. Prior to implementation of this project our institution's score was 0, and after planning and development of our transition plan the score improved to 38. Due to time constraints full implementation of the transition plan as not been completed so not all aspects of the program were able to be evaluated. It is anticipated this score will increase with further implementation of the program. As the survival of children born with CHD continues to improve, formal transition programs will an integral part of the congenital cardiology practice. In order to meet the growing population of CHD survivors, formal transition plans should be incorporated to facilitate optimal care and improve patient outcomes.