Awareness, attitudes, and barriers toward Transthyretin Amyloid Cardiomyopathy in Latin America: A questionnaire-based cross-sectional study
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.
Article Details
Authors (19)
Cecilia Camacho-Hubner
Marcia Waddington-Cruz
María Juliana Rodríguez-González
Marcus Vinicius Simões
Juan David López-Ponce de León
Fabio Fernandes
Erika María Martínez-Carreño
Juan Pablo Costabel
Enrique A. Berrios-Bárcenas
Fabio Barroso
José Angel Cigarroa López
Rosa Ortega Reyes
Jaime Alvarez
Diego Pérez de Arenaza
Diana Buitrago
Constanza Otero
Claudenice Leite Bertoli de Souza
Juan Sebastián Molina Gómez
Guilherme Silva Julian