Austin Powers' Steamroller: Lessons Learned to Benefit Patients with Congenital Heart Disease

Area of Science:

• Cardiology
• Congenital Heart Disease
• Advanced Cardiac Care

Background:

• Patients with single-ventricle physiology palliated by the Fontan procedure face a complex, lifelong care trajectory.
• A significant majority of healthcare providers anticipate future heart failure (HF) and the eventual need for heart transplantation (HT) in these patients.
• Current training pathways for pediatric and adult cardiologists may not adequately prepare them for the specialized needs of Fontan survivors.

Discussion:

• Despite anticipating HF/HT, most providers (69%) are undecided or disagree on the necessity of routine HF/HT cardiologist evaluation for Fontan patients.
• This disconnect may stem from the absence of a formal HF/HT subspecialty within pediatric cardiology training.
• Limited HF/HT training requirements for adult congenital heart disease (ACHD) providers and adult HF/HT cardiologists further exacerbate this issue.

Key Insights:

• A substantial gap exists between the expected long-term outcomes for Fontan patients and the perceived need for specialized HF/HT care.
• Providers caring for Fontan patients demonstrate incongruent preparation regarding the anticipated need for heart failure and heart transplant interventions.
• The lack of standardized training pathways in HF/HT for CHD complicates the management of these complex patients.

Outlook:

• There is a critical need to bridge the gap in provider understanding and training for the long-term management of Fontan survivors.
• Developing integrated care models and specialized training for HF/HT in CHD is essential.
• Future efforts should focus on aligning provider preparedness with the lifelong, complex care needs of single-ventricle patients post-Fontan.