Ensuring appropriate lifelong care for congenital heart disease patients has increasingly become a priority for congenital heart disease care providers as their patients live longer. In response to the growing concern about facilitating appropriate transition, the American College of Cardiology participated in the American College of Physicians (ACP) to adapt the existing tools on Got Transition site at www.gottransition.org for specific subspecialties.

The ACPC Section facilitated a team of pediatric and adult congenital specialists, patients and patient advocates collaborated to develop transition tools to provide resources for CHD specialists, families and young adult patients with congenital heart disease. With significant advances in the care of congenital heart disease, there are now more than one million US adults living with congenital heart disease (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.

The College and its Adult Congenital and Pediatric Cardiology Section welcome input as CHD specialists and patients use these tools. Please provide input to acpcsection@acc.org.

The Transitional Tools [PDF] display describes the intent and goals of each of the following tools and are available below:

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

The link to the complete ACPs Pediatric to Adult Transitions Initiative is available here.

The American College of Cardiology and the Adult Congenital and Pediatric Cardiology Section thank the following team for sharing their expertise and time in developing the tools:

  • Michelle Gurvtiz MD, FACC American College of Cardiology
  • Curt Daniels MD, FACC Adult Congenital Heart Association
  • Danielle Hile Adult Congenital Heart Association
  • Lindsay Barth Adult Congenital Heart Association
  • Andrew Mackie MD American College of Cardiology
  • Roy Jedekin MD, FACC American College of Cardiology
  • Keila Lopez MD American College of Cardiology
  • Arwa Saidi MB, BCh, FACC American College of Cardiology
  • Devyani Chowdhury MBBS, FACC American College of Cardiology
  • Susan Fernandes PA-C American College of Cardiology
  • 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