Contemporary Provider Management Practices and Attitudes Toward Referral for Advanced Heart Failure Therapies in Fontan Patients Across North America

Sara Sadat-Hossieny, Tara Karamlou, Bradley S. Marino, Jeffrey G. Gossett, Kurt Schumacher, Angira Patel, Sarah Worley, Tarek Alsaied, Shahnawaz Amdani*

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

6 Scopus citations


Background: To date, no reports have described clinicians’ management practices for patients with Fontan circulatory failure or their understanding of risk factors for mortality and transplant outcomes in these patients. Methods and Results: A cross-sectional survey of caregivers across North America was conducted from February to September 2020. Responses were compared by primary specialty (heart failure/transplant vs non-heart failure/transplant), years of experience (early, mid, and late career), and Fontan center volume (low, medium, and high). Of 400 responses, the majority were from general cardiologists (111, 28%) followed by heart failure/transplant specialists (93, 23%). Although most agreed that patients with Fontan physiology will have signs/symptoms of heart failure (369 [93%]) and eventuate in heart transplant (286 [72%]), many disagreed (180 [45%]) that routine evaluation by a transplant cardiologist is needed without symptoms. Transplant providers were more likely than non-transplant providers to suggest referral for manifestations of Fontan circulatory failure such as protein-losing enteropathy, plastic bronchitis, liver fibrosis/cirrhosis, and worsening valve regurgitation. Non-transplant providers were more likely to suggest that protein-losing enteropathy, plastic bronchitis, and Fontan-associated liver disease lead to inferior outcomes after transplantation. Early career and transplant providers more favorably viewed ventricular assist device use for Fontan patients failing traditional heart failure therapy (P < .05 for all). Conclusions: There is significant variation in the management of Fontan patients, including heterogeneous timing of referral of such patients to the heart failure/transplant team, which may have implications for future outcomes.

Original languageEnglish (US)
Pages (from-to)576-587
Number of pages12
JournalJournal of Cardiac Failure
Issue number4
StatePublished - Apr 2022


  • Fontan
  • circulatory failure
  • heart transplant outcomes
  • medications
  • practice variation
  • ventricular assist device

ASJC Scopus subject areas

  • Cardiology and Cardiovascular Medicine


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