What Do You Know About Your Heart?

What do you know about your heart? This is a question I typically ask when I encounter a new patient in our hospital’s adult congenital cardiology clinic. I ask that question hundreds of times each year and am met with a wide range of responses. While I sometimes have a young adult who can list off all of his or her congenital heart disease (CHD) diagnoses and tell me the details of every surgical detail, I am more often left with a shrug of the shoulders and a glance over at the patient’s parents.

As adult congenital cardiology providers, we find ourselves in this situation due to the multiple cardiac surgical and therapeutic advances during the past half century. Now, survival to adulthood for those children born with CHD has become expected. Given this, the focus has shifted during the past one to two decades from “getting to adulthood” to “preparing for adulthood,” leading to the development of CHD transition programs at most major CHD centers. The goal of a transition program is to focus on enabling these teens and young adults to gain knowledge and take ownership of their healthcare.

Before proceeding, let me clear up one common misunderstanding. Transition is not the process of changing from a pediatric to an adult cardiac provider. That is called transfer. While transferring care often is the end result of a transition program, transitioning should occur regardless of whether a change in providers will take place. Transition is an educational and informative process that prepares teen patients to gradually assume responsibility for their own healthcare.

Given this, the transition process starts at a relatively young age. The “guideline” recommendation is for the transition process to begin at age 12. The process typically entails multiple educational encounters over the course of many years to inform the teen regarding their individual CHD diagnoses, surgical history and expectations for the future. Additionally, the process includes education on performing basic, but important, functions such as scheduling their own appointments and refilling their own medications.

As the process moves forward, the teen ideally takes on more responsibility in their healthcare decision making—initially in discussions with and deference to their parents, but eventually as the ultimate decision maker. As difficult as it may be, parents need to encourage this transformation and promote healthcare ownership for their young son or daughter.

There is no one-size-fits-all approach for CHD transition. A program should be flexible enough to individualize the process for each patient based on their own maturity and developmental status. For some, teens may graduate from the transition program after only a few years, while others may still require continued educational efforts well into adulthood.

For most, the end result for the transition program graduate is to transfer care from a pediatric to an adult cardiac provider. At Texas Children’s Hospital, this transfer process is aided in that the young adult is transferring just down the hall to our adult congenital cardiology clinic. For those transferring to a new provider location, ample care should be taken to ensure a thorough hand-off between pediatric and adult providers to make the transfer as seamless as possible.

Our approach at Texas Children’s Hospital is a formal transition program, which over the last couple years has seen tremendous growth. And, since the program’s inception, I have started to see a lot less shoulder shrugs when I ask the question, “What do you know about your heart?”