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Unifying nomenclature describing the individuals with Fontan circulation
Ashish H Shah1, David Renaud2, Sivasubramanian Ramakrishnan3
1Department of Internal Medicine, Section of Cardiology, Max Rady College of Medicine, University of Manitoba, Winnipeg, Manitoba, Canada.
Insights
Standardizing language for individuals with a Fontan circulation is crucial. Adopting person-first nomenclature like "patients with a Fontan circulation" improves communication and research consistency.
Area of Science:
- Cardiology
- Medical Terminology
- Patient Care
Background:
- The Fontan circulation population is diverse, unified by surgical physiology, not a single diagnosis.
- Current terminology is inconsistent, using surgical procedures, anatomy, or disease labels.
- Varied language complicates communication, research comparability, and person-centered care.
Purpose of the Study:
- To review the evolution and use of Fontan circulation terminology.
- To highlight the clinical and research implications of inconsistent language.
- To propose standardized, person-first nomenclature for the Fontan community.
Main Methods:
- Literature review of historical and current terminology.
- Analysis of clinical and research implications of language variability.
- Delineation of anatomical substrates versus shared Fontan physiology.
Main Results:
- Inconsistent terminology hinders clear communication and data harmonization.
- Existing labels do not accurately represent the diverse Fontan population.
- Standardized, person-first language is needed for clarity and patient-centered care.
Conclusions:
- Adopting "individuals (or patients) with a Fontan circulation" with anatomical descriptors is proposed.
- Unified terminology can enhance clarity, data harmonization, and patient outcomes.
- Standardized nomenclature supports better research and care for the Fontan community.
Abstract:
Language shapes clinical care, research interpretation, and patient identity, particularly in chronic and heterogeneous conditions. Individuals living with a Fontan circulation represent a growing and diverse population unified by a surgically created physiology rather than a single anatomical diagnosis. Despite this, terminology used in clinical practice and research remains inconsistent, variably defining individuals by surgical procedure, anatomy, or loosely applied disease labels. Such variability complicates communication, limits comparability across studies, and risks reducing person-centered care. In this review, we examine the historical evolution and current use of terminology describing individuals with a Fontan circulation, highlight the clinical and research implications of inconsistent language, and delineate distinctions between anatomical substrates and shared Fontan physiology. We propose adoption of standardized, person-first nomenclature, specifically "individuals (or patients) with a Fontan circulation" with precise anatomical descriptors used where relevant. Unified terminology may enhance clarity, data harmonization, and patient-centered outcomes across the Fontan community.
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