Fontan Referral for Advanced Care

Patients with Fontan physiology may develop symptoms that require life-saving cardiac care such heart failure medicines, VAD support and/or transplantation. ACTION is working on timely referral for this cohort which is extremely important for optimal outcomes.

What is the project focus?

Individuals born with complex congenital heart disease sometimes undergo a Fontan surgery. This surgery allows infants, who otherwise might die early in childhood, to live into adulthood. The Fontan surgery, however, has a unique set of complications. Some of these individuals may require advanced cardiac care such as a VAD or heart transplant during childhood or as an adult. The current project aim is to assess if patients with Fontan failure are being referred to advanced heart failure specialists in a timely manner. Earlier referral leads to better outcomes.

Who is impacted?

Fontan patients whom are referred for advanced cardiac care, such as VADs or heart transplant evaluation.

What are we doing to help?

Consideration for Advanced Heart Failure Consultation in Fontan Patients

A guide to help general and primary cardiologists and their patients/families about appropriate timing for referral for advanced therapies.

Fontan Surveillance: When to Refer to Heart Failure Specialists

ACTION created a roadmap to provide recommendations on routine Fontan surveillance and when to refer for heart failure/transplant care. A referral does not necessarily mean a transfer of care, but often means a second set of eyes on the patient, with specific recommendations surrounding their management. In some cases, patients may require advanced therapies or heart transplantation. The goal of this roadmap is to decrease the percentage of patients who are referred too late to be eligible for advanced therapies.


What data do we have?

From July 2019 to July 2021, 13 ACTION sites contributed data from 60 Fontan patients that were seen for an initial heart failure/heart transplant consultation. Over a third of Fontan patients referred had care escalation within 30 days, with 12% were referred too late. With this data, we know we have work to do and future projects are being planned to improve referral patterns.

Patient characteristics at time of heart failure/transplant consultation
Patient characteristics at time of heart failure/transplant consultation (n=60)