Earlier this year a team of pediatric and adult congenital specialists, patients and patient advocates collaborated to develop transition tools to provide resources for congenital heart disease (CHD) specialists, families and young adult patients with CHD.

The Pediatric to Adult Transitions Initiative was developed in response to an invitation from the American College of Physicians to enhance the tools already available at the Got Transition website to make them more specific for different subspecialties.

With significant advances in the care of CHD, there are now more than one million U.S. adults living with CHD. Of this population, it is estimated that at least 500,000 have a complex form of CHD, and will need lifelong specialized care. 

However, research indicates up to 50 percent of families stop seeking cardiac care for their children by age 13, and only about 20 percent of adults currently receive recommended specialized congenital cardiovascular care. CHD patients are at risk of developing new problems and a significant number will need interventions in adulthood including re-operations, interventional catheterizations, catheter ablations, and even cardiac transplant.

Ensuring appropriate life-long care for CHD patients has increasingly become a priority for CHD care providers as their patients live longer. 

The Transitional Tools describe the intent and goals of each of the following:

1. Adult Health Knowledge Assessment
2. Adult Self Assessment (Transition Skills)
3. Pediatric Self Assessment (Transition Skills)
4. Youth Health Knowledge Assessment
5. Medical Summary Transition

A link to the complete Pediatric to Adult Transitions Initiative is available here. The College and its Adult Congenital and Pediatric Cardiology (ACPC) Section welcome input as CHD specialists and patients use these tools. Please provide input to acpcsection@acc.org.

The ACC and the ACPC Section thank the following individuals for sharing their expertise and time in developing the tools:

Michelle Gurvtiz, MD, FACC - ACC

Andrew Mackie, MD - ACC

Roy Jedekin, MD, FACC - ACC

Keila Lopez, MD - ACC

Arwa Saidi, MB, BCh, FACC - ACC

Devyani Chowdhury, MBBS, FACC - ACC

Sue Fernandes, PA-C - ACC

Curt Daniels, MD, FACC - Adult Congenital Heart Association

Danielle Stephens, MD, FACC - Adult Congenital Heart Association

Lindsay Barth - Adult Congenital Heart Association

Jeremy Nicolarsen, MD - Fellow in Training

Jodi Lemacks - Mended Little Hearts

Amy Basken - Pediatric Congenital Heart Association

Adrienne Kovacs, PhD - Psychologist

Naomi Gauthier, MD - Pediatric Cardiologist