“Contemporary provider management practices and attitudes towards referral for advanced heart failure therapies in Fontan patients across North America” aimed to understand practice variations among Fontan caregivers, referral for advanced heart failure therapies, and risk factors for mortality. It was published December 9, 2021 in Journal of Cardiac Failure, summarizing the largest North American survey outlining how FONTAN patients are treated.
Researchers surveyed Fontan caregivers across North America and analyzed 400 responses. They wanted to highlight practice variations based on Fontan caregiver’s clinical specialty (Heart Failure/Transplant vs. Non-heart failure/Transplant), years of experience (early, mid or late career), and provider’s Fontan center volume (low, medium or high).
Of 400 responses analyzed, there was wide variation in beliefs regarding risk factors for mortality in Fontan patients, understanding of heart transplant outcomes, and referral patterns and indications for advanced heart failure therapies among Fontan patients. The greatest heterogeneity in practice patterns were observed among heart failure/transplant vs. non-heart failure/transplant physicians.
What was most striking was that among all 400 providers, while most strongly agreed or agreed (369 respondents, 93%) that most Fontan patients will eventually have signs/symptoms of heart failure and need a heart transplant at some point during their lives (286 respondents, 72%), only 31% (123 respondents) strongly agreed or agreed to routine evaluation of Fontan patients by a heart failure/transplant provider.
This study has highlighted the areas where Fontan caregivers differ widely in their beliefs and in their referral practices to a heart failure/transplant provider and serves as a “Call to Arms” for all stakeholders – patients, parents/caregivers and clinicians to come together to decrease heterogeneity, standardize medical care and referral practices for Fontan patients to a heart failure/transplant provider so that we can improve outcomes.
Many ACTION members were part of this important study:
- Shahnawaz Amdani, Cleveland Clinic Children’s
- Jeffrey Gossett, Cohen Children’s Hospital
- Kurt Schumacher, Children’s Health Dallas / UT Southwestern
- Angira Patel, Lurie Children’s Hospital of Chicago