“What do you know about your heart?” I typically ask this question when I encounter a new patient in the Texas Children’s adult congenital cardiology clinic. I ask this probably hundreds of times every year, and I’m always met with a wide range of responses. Sometimes I have young adults who can list off his/her congenital heart disease (CHD) diagnoses and discuss the precise details of their conditions, but I’m more often met with a shrug of the shoulders and a helpless glance over to the parents.
For adult congenital cardiology providers, we find ourselves in these situations due to the multiple cardiac surgical and therapeutic advances coming from the past half century. Now, survival into adulthood for children born with CHD has become expected. Given this, the focus has shifted from “getting to adulthood” to “preparing for adulthood” over the past two decades, leading to the development of CHD transition programs at most major CHD centers across the nation. The goal of a transition program is to focus on enabling these adolescents and teenagers to gain knowledge and take ownership of their health care.
Before proceeding, I should clear up one common misunderstanding. Transition is not the process of changing from a pediatric to an adult cardiac provider – this is called a transfer. While transferring care is often the end result of a transition program, transitioning should occur regardless of whether a change in providers will take place or not.
Transition is an educational, transformative process set to prepare teenage and adolescent patients to gradually assume responsibility for their own health care. In turn, the transition process starts at a relatively young age; the “guideline” recommendation is for it to begin at age 12. The process typically entails multiple educational encounters over the course of several years to inform the patient on their individual CHD diagnoses, surgical history and expectations for the future. Additionally, the process includes patient education on performing basic, yet important, functions such as scheduling their own appointments and refilling their own medications. As the process moves forward, the patient ideally takes on more responsibility in their health care decision-making – initially in discussions with and in deference to their parents, but eventually as the ultimate decision-maker. This process can be difficult, but parents need to encourage this transformation and promote responsible health care 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 maturity and developmental status. For some, patients might graduate from the transition program after only a few years, while others might require continued educational support well into adulthood. For most, the end result for the transition is to transfer care from a pediatric to adult cardiac provider. At Texas Children’s, this transfer process is simplified since the patient is transferring just shortly 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.
We have a formal transition program at Texas Children’s Heart Center, led by Dr. Keila Lopez. Over the past few years, this program has seen tremendous growth with help from our dedicated transition nurse, DK Lovick, and social worker, Nicole Goodly. Since the program’s inception, I’ve started to see a lot less shoulder shrugs when I ask the question: “What do you know about your heart?”
If you’re interested in learning more about our Cardiology Transition Medicine Program, click here.
This entry originally appeared as a blog post for the Adult Congenital Heart Association.