Adolescent Congenital Heart Disease Transition program

The adolescent congenital heart disease transition program was developed to improve the transition from child and family-centered pediatric care to adult-oriented cardiac care. Patients with congenital heart disease should continue to be followed by an adult congenital heart disease specialist throughout adulthood to keep their heart healthy. Unfortunately, more than half of patients with congenital heart disease are lost to follow up with a cardiologist by the age of 18.

This program will empower youth to understand their heart defect and assume responsibility of their health. Parents will support their child through a guided decision-making process as they become more independent. Our goal is to help create a bridge between the pediatric and adult care models that will allow a seamless transition.

Process

The transition process is designed to be gradual to allow for patients and their parents to prepare for eventual transfer to adult cardiac care. An individualized transition plan will be developed in partnership with the patient and their parents based on each patient’s unique needs. The plan will be reviewed and updated at routine office visits to address any gaps in knowledge and skill deficits.

Transition readiness assessment is an important part of the process and will be performed along the way to ensure patient’s understanding of their heart condition, as well as mastery of skills necessary to function independently in the adult care model. This will help minimize stress and provide the best chance for a successful transition.

Partnership with the Midwest Adult Congenital Cardiac (MACC) center

When an adolescent patient achieves transition readiness, typically between ages 18 and 21, they will be transferred from the transition program to the MACC center for ongoing adult cardiac care. The MACC center team of specialists and state-of-the-art technology provide unmatched quality of care and expertise for the full spectrum of congenital heart disease. At the MACC center, you will continue to receive coordinated care using the most technologically advanced diagnostic and therapeutic treatments available, provided by adult congenital specialists who truly care.