Liver Health Informational Resources

To highlight the importance of consistent education and monitoring of Fontan-associated liver disease (FALD) as a part of overall Fontan care, the SV-ONE Liver Health QI Project Workgroup developed a set of informational resources in collaboration with clinicians, individuals with Fontan circulation, and family members.

About the Resources

The Liver Health informational resources draw from a combination of medical literature and expert opinion. Rather than serving as strict evidence-based guidelines, these resources are designed to help individuals centers develop protocols for Fontan-associated liver disease (FALD) surveillance and care. They highlight the importance of lifelong, age-appropriate FALD education for patients and families, aiming to reduce practice variation, promote consistent surveillance, and improve care for individuals living with Fontan circulation. We encourage families to discuss the information with their healthcare providers to determine the best approach for their individual care needs.

These resources include:

  • A patient and family guide to understanding liver health surveillance and testing

  • An evidence-informed clinician resource with practical strategies for supporting FALD surveillance

  • A guide for providers interested in serving as liver health champions at their care centers

Fontan Liver Health Testing Informational Resource

For Individuals with SVHD and Families

This resource for individuals with SVHD and family members explains FALD and the importance of liver health surveillance as part of lifelong Fontan care. Developed by clinicians, individuals with single ventricle circulation, and family members, it provides practical information to support understanding and monitoring of liver health.

Adult Version
Pediatric Version

Fontan Liver Health Surveillance Strategies Resource

For Healthcare Providers

This resource for clinicians provides practical, evidence-informed approaches to liver health surveillance for individuals with Fontan circulation. It includes suggested monitoring strategies, referral considerations, and guidance to support consistent patient and family education about Fontan-associated liver disease (FALD).

Learn more

Becoming a Liver Health Champion Resource

For Healthcare Providers

This resource for clinicians outlines how providers can develop expertise in Fontan-associated liver disease (FALD) and serve as liver health champions within their care centers. It offers guidance on building knowledge, fostering multidisciplinary collaboration, and supporting consistent liver health surveillance and management. 

Learn more

Acknowledgements

Acknowledgements

These informational resources were developed by the Liver Health Workgroup consisting of healthcare providers, individuals with Fontan circulation, and family members. They were also reviewed by a Liver Health Expert Workgroup.  

Quality Improvement Sponsor: 

  • Sal Ginde, MD

Executive Sponsor: 

  • Jack Rychik, MD

Project Development Workgroup Members:

  • Andrew Cheng, MD 

  • Jennifer Conway, MD, MSc 

  • Noelle Ebel, MD 

  • Daniel Ganger, MD 

  • Autumn Jones, APRN, FNP-C 

  • Jana McClymonds 

  • Cara Morin, MD, PhD 

  • Mary Rouzer, DNP, APRN, FNP-C 

  • Jack Rychik, MD 

  • Anita Saraf, MD, PhD 

  • Anita Pai, MD 

  • Fred Wu, MD 

Expert Feedback Workgroup Members:

  • Letitia Aloysius 

  • Arsalan Altaf 

  • Shahnawaz Amdani, MD, MBBS 

  • Adrian Dantzer 

  • Greg Fleming, MD 

  • Amber Hildreth, DO 

  • Taylor Houlihan, MD 

  • Katherine Madigan 

  • Mandi McCormick, MD 

  • Nadia Naz, MD 

  • Melanie Parent, APNP 

  • Elizabeth Rand, MD 

  • Suren Reddy, MD 

  • Rusty Rodriguez, MD 

  • Jose Silva Sepulveda, MD 

  • Rachael Suddarth, PhD, CCC-SLP 

  • Divya Suthar, MD, MHA 

  • Molly Weisert 

  • Kerry Wong, MD, FRCPC