Faculty Collaboration Database

Reaching consensus for unified medical language in Fontan care. ESC Heart Fail 2021 Oct;8(5):3894-3905

Date

07/01/2021

Pubmed ID

34190428

Pubmed Central ID

PMC8497335

DOI

10.1002/ehf2.13294

Scopus ID

2-s2.0-85108964778 (requires institutional sign-in at Scopus site)   69 Citations

Abstract

AIMS: The Fontan operation has resulted in improved survival in patients with single-ventricle congenital heart disease. As a result, there is a growing population of teenagers and adults with a Fontan circulation. Many co-morbidities have been increasingly recognized in this population due to the unique features of the Fontan circulation. Standardization of how Fontan co-morbid conditions are defined will help facilitate understanding, consistency and interpretability of research and clinical experience. Unifying common language usage in Fontan is a critical precursor step for data comparison of research findings and clinical outcomes and ultimately accelerating improvements in management for this growing group of patients. This manuscript aimed to create unified definitions for morbidities seen after the Fontan palliation.

METHODS: In association of many congenital heart disease organizations, this work used Delphi methodology to reach a broad consensus among recognized experts regarding commonly used terms in Fontan care and research. Each definition underwent at least three rounds of revisions to reach a final definition through surveys sent to experts in the field of single-ventricle care.

RESULTS: The process of reaching a consensus on multiple morbidities associated with the Fontan procedure is summarized in this manuscript. The different versions that preceded reaching the consensus are also presented in the Supporting Information. Table 1 represents the final definitions according to the consensus.

CONCLUSIONS: We propose the use of these definitions for clinical care, future research studies, registry development and clinical trials.

Author List

Alsaied T, Rathod RH, Aboulhosn JA, Budts W, Anderson JB, Baumgartner H, Brown DW, Cordina R, D'udekem Y, Ginde S, Goldberg DJ, Goldstein BH, Lubert AM, Oechslin E, Opotowsky AR, Rychik J, Schumacher KR, Valente AM, Wright G, Veldtman GR

Author

Salil Ginde MD, MPH Associate Professor in the Pediatrics department at Medical College of Wisconsin

MESH terms used to index this publication - Major topics in bold

Adolescent
Adult
Consensus
Fontan Procedure
Heart Defects, Congenital
Humans
Language
Registries