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?
ACTION is working on guidance to help guide cardiologists and families about appropriate timing for referral for advanced therapies.
See our Consideration for Advanced Heart Failure Consultation in Fontan Patients guideline for general/primary cardiologists.
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.