Awareness, attitudes, and barriers toward Transthyretin Amyloid Cardiomyopathy in Latin America: A questionnaire-based cross-sectional study

BACKGROUND: Cardiac Amyloidosis (CA), specifically Transthyretin Amyloid Cardiomyopathy (ATTR-CM), is an under-recognized, progressive, and fatal disease. Comprehensive primary data describing awareness, attitudes, and barriers to treatment in Latin America (LATAM) are lacking, highlighting a gap between guidelines and real-world clinical practice. METHODS: A cross-sectional, questionnaire-based observational study was conducted among 470 physicians actively involved in patient management across 8 LATAM countries (June-August 2023). The study assessed their awareness, attitudes, and barriers concerning ATTR-CM. Descriptive analysis was performed. RESULTS: Limited knowledge of ATTR-CM was observed. Awareness of its pathophysiology was reported by 50.2%. Patients consulted 4-5 physicians before receiving a confirmed diagnosis. Cardiologists managed most day-to-day cases (76.2%). Transthyretin genetic testing was available to only 26.4%. Local treatment protocols relied on international guidelines (87.4%), with Real-World Data considered important by 60.6%. Patient cost and access to tafamidis were frequently reported barriers. Follow-up commonly relied on echocardiography, NT-pro BNP, NYHA classification, and ECG/Holter ECG. CONCLUSIONS: Difficulties in ATTR-CM diagnosis and management in LATAM were influenced by varying knowledge levels, gaps in diagnostic algorithms, and significant access barriers. These factors contribute to delayed diagnosis and management. Enhanced, tailored training strategies and collaborative efforts are necessary to improve early diagnosis, effective treatment, and ultimately, patient outcomes in the region.

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Journal
PLoS ONE
Published
2026-06-26
DOI
https://doi.org/10.1371/journal.pone.0351224
Primary Topic
Amyloidosis: Diagnosis, Treatment, Outcomes
Type
article
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article

Awareness, attitudes, and barriers toward Transthyretin Amyloid Cardiomyopathy in Latin America: A questionnaire-based cross-sectional study

José A. Cigarroa-López, Juan David López‐Pónce de León, Guilherme Silva Julian, Juan Pablo Costabel et al.
PLoS ONE
Amyloidosis: Diagnosis, Treatment, Outcomes
article

Awareness, attitudes, and barriers toward Transthyretin Amyloid Cardiomyopathy in Latin America: A questionnaire-based cross-sectional study

José A. Cigarroa-López, Juan David López‐Pónce de León, Guilherme Silva Julian, Juan Pablo Costabel, Erika Martínez-Carreño, Fábio Barroso, Claudenice Leite Bertoli de Souza, Marcus Vinı́cius Simões, Rosa Ortega Reyes, Jaime Álvarez, Constanza Otero, Cecilia Camacho‐Hübner, Diana Buitrago, Márcia Waddington-Cruz, Enrique A. Berrios-Bárcenas, Fabio Fernandes, Diego Pérez de Arenaza, María Juliana Rodríguez-González, Juan Sebastián Molina Gómez
article en

Abstract

BACKGROUND: Cardiac Amyloidosis (CA), specifically Transthyretin Amyloid Cardiomyopathy (ATTR-CM), is an under-recognized, progressive, and fatal disease. Comprehensive primary data describing awareness, attitudes, and barriers to treatment in Latin America (LATAM) are lacking, highlighting a gap between guidelines and real-world clinical practice. METHODS: A cross-sectional, questionnaire-based observational study was conducted among 470 physicians actively involved in patient management across 8 LATAM countries (June-August 2023). The study assessed their awareness, attitudes, and barriers concerning ATTR-CM. Descriptive analysis was performed. RESULTS: Limited knowledge of ATTR-CM was observed. Awareness of its pathophysiology was reported by 50.2%. Patients consulted 4-5 physicians before receiving a confirmed diagnosis. Cardiologists managed most day-to-day cases (76.2%). Transthyretin genetic testing was available to only 26.4%. Local treatment protocols relied on international guidelines (87.4%), with Real-World Data considered important by 60.6%. Patient cost and access to tafamidis were frequently reported barriers. Follow-up commonly relied on echocardiography, NT-pro BNP, NYHA classification, and ECG/Holter ECG. CONCLUSIONS: Difficulties in ATTR-CM diagnosis and management in LATAM were influenced by varying knowledge levels, gaps in diagnostic algorithms, and significant access barriers. These factors contribute to delayed diagnosis and management. Enhanced, tailored training strategies and collaborative efforts are necessary to improve early diagnosis, effective treatment, and ultimately, patient outcomes in the region.

PLoS ONEVol. 21(6)
Universidade de São Paulo (BR), Pfizer (United States) (US), Hospital Italiano de Buenos Aires (AR), IQVIA (United Kingdom) (GB), Corporación Universitaria Latinoamericana (CO), Hospital Samaritano de São Paulo (BR), Fundación Valle del Lili (CO), Fundación para la Lucha contra las Enfermedades Neurológicas de la Infancia (AR), Centro Medico Nacional Siglo XXI (MX), Obstech (Chile) (CL), Clínica MEDS (Chile) (CL), Institute of Cardiology (CO), Instituto Nacional de Cardiología (MX), Instituto Cardiovascular de Buenos Aires (AR), Icesi University (CO)
Pfizer
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Openalex Percentile: Top 11%
Amyloidosis: Diagnosis, Treatment, Outcomes
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