Collaborative care models in adult congenital heart disease transplant

While multidisciplinary collaboration is a tenant of quality heart failure care and critical to the success of transplant programs, this essay challenges the temptation to shoehorn adult congenital heart disease (ACHD) patients into preexisting processes and paradigms. We explore the development of more relevant models, purposefully designed to improve ACHD transplant volumes and outcomes.

Globally, the rapid acceleration of ACHD patients living with and dying from HF stands in stark contrast to their access to transplant. Inferior early outcomes after ACHD transplant remain an undeniable barrier. And yet while all large registry datasets attest to this statistic, a few centers have achieved results comparable to those in acquired heart disease. This despite increases in both ACHD candidate complexity and referrals for Fontan Circulatory Failure. Perhaps something in their approach to care delivery is key?.

Alone, neither ACHD nor transplant programs can provide optimal management of HF in ACHD. A siloed approach is similarly inadequate. Building new ACHD-HF-Transplant teams, centered on the patient and supplemented by ad hoc expert partnerships, is an exciting approach that can improve outcomes, create a high-quality training environment, and in our experience, is a truly rewarding way of working together.