Project Phase:

The Liver Health Project is in the active phase.

Brief Summary:

In surveys of FON care centers and individuals with Fontan circulation and their families, Fontan-associated liver disease (FALD) was identified as a priority area on which to focus QI efforts. This project aims to improve the reliable liver health education, surveillance, and management of individuals living with Fontan circulation.

SMART Aim:

Increase the percentage of patients whose liver health is reliably surveilled at clinic visits according to age-appropriate recommendations to >80%.

Participation Details:

The Liver Health Project is comprised of 24 network centers and meet monthly during Action Period Calls.

Leaders:

Alexis Gumm, MD 

Anita Pai, MD 

Fred Wu, MD 

Quality Improvement Sponsor:

Sal Ginde, MD

Executive Sponsor:‍ ‍

Jack Rychik, MD

A Special Thank You to Project Development Workgroup Members & Expert Feedback Workgroup Members.

Project Development Workgroup Members include Andrew Cheng, MD; Jennifer Conway, MD, MSc; Noelle Ebel, MD; Daniel Ganger, MD; Alexis Gumm, MD; Autumn Jones, APRN, FNPC; Jana McClymonds; Cara Morin, MD, PhD; Anita Pai, MD; Mary Rouzer, DNP, APRN, FNPC; Jack Rychik, MD; Anita Saraf, MD, PhD; and Fred Wu, MD. 

Expert Feedback Workgroup Members include 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; Anita Pai, MD; Melanie Parent, APNP; Elizabeth Rand, MD; Suren Reddy, MD; Rusty Rodriguez, MD; Jose Silva Sepulveda, MD; Rachael Suddarth, PhD, CCCSLP; Divya Suthar, MD, MHA; Molly Weisert; and Kerry Wong, MD, FRCPC. 

Measures:

  • The percentage of patients aged 12 to 17 for whom imaging was done as part of a liver health assessment in the past two years

  • The percentage of patients ages 18 and older for whom imaging was done as part of a liver health assessment in the past year

  • The percentage of patients aged 12 to 17 for whom imaging was done in the last two years out of the number of patients who had a longitudinal update that month

  • The percentage of patients aged 18 and older for whom imaging was done in the last year out of the number of patients who had a longitudinal update that month

  • The percentage of patients aged 12 to 17 for whom Alpha Fetoprotein testing was done in the past two years

  • The percentage of patients aged 18 and older for whom Alpha Fetoprotein testing was done in the past year

  • The percentage of patients aged 12 to 17 for whom Alpha Fetoprotein testing was done in the last two years out of the number of patients who had a lab form update that month

  • The percentage of patients aged 18 and older for whom Alpha Fetoprotein testing was done in the last year out of the number of patients who had a lab form update that month

Engage with This Project

The Project Workgroup released the first installment of its informational resources related to monitoring Fontan-associated liver disease (FALD). The first resource is aimed and individuals with SVHD and their families. Learn more.

Stay tuned for additional engagement opportunities regarding the Liver Health Project.