Acta gastroenterologica Latinoamericana · 2026
[Cystic Fibrosis in Latin America: Clinical Practices, Diagnosis, and Therapeutic Access: a Multicenter Cross-sectional Study].
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Higuera Carrillo Michelle, Arregui María Cristina, Arcucci María Soledad, Reyes-Apodaca Magali, Navarro Díaz Elizabeth, Sereno Violeta, Oropeza Gianfelici Gabriela, Rodríguez Guerrero Magaly, Jijón Andrade María Clara, Alomía Mario, Boldrini Gustavo, González Rozó Natali, Previte Nastasi Pierangela, Ortiz Paranza Lourdes
Аннотация
INTRODUCTION: Cystic fibrosis is a condition that requires early diagnosis, multidisciplinary follow-up, and access to specialized therapies. The diversity of healthcare systems in Latin America could affect the quality of care.
OBJETIVE: The objective was to describe clinical practices, diagnostic resources, and access to therapies at centers that care for patients with cystic fibrosis in the region.
METHODS: A descriptive cross-sectional study was conducted using an online survey administered in 2024 to 101 healthcare professionals in Latin America. The study examined institutional characteristics, care burden, availability of neonatal screening, multidisciplinary organization, diagnostic methods, and access to CFTR modulators.
RESULTS: A total of 101 responses from healthcare professionals were analized; 52 respondents (51.5%) worked in centers specializing in cystic fibrosis and 49 (48.5%) in non-specialized centers, a distribution that accounts for 100% of the sample. Respondents working in specialized centers had a higher patient burden and more comprehensive multidisciplinary teams. Neonatal screening and the sweat test were reported as available by 58 (57.4%) and 50 (49.5%) of the respondents, respectively. Genetic testing and CFTR modulators showed limited and variable availability across countries.
CONCLUSIONS: Cystic fibrosis care in Latin America is heterogeneous. Standardizing protocols, strengthening specialized centers, and improving access to molecular diagnosis and advanced therapies are regional priorities that would enhance timely diagnosis and treatment, as well as patient survival.
OBJETIVE: The objective was to describe clinical practices, diagnostic resources, and access to therapies at centers that care for patients with cystic fibrosis in the region.
METHODS: A descriptive cross-sectional study was conducted using an online survey administered in 2024 to 101 healthcare professionals in Latin America. The study examined institutional characteristics, care burden, availability of neonatal screening, multidisciplinary organization, diagnostic methods, and access to CFTR modulators.
RESULTS: A total of 101 responses from healthcare professionals were analized; 52 respondents (51.5%) worked in centers specializing in cystic fibrosis and 49 (48.5%) in non-specialized centers, a distribution that accounts for 100% of the sample. Respondents working in specialized centers had a higher patient burden and more comprehensive multidisciplinary teams. Neonatal screening and the sweat test were reported as available by 58 (57.4%) and 50 (49.5%) of the respondents, respectively. Genetic testing and CFTR modulators showed limited and variable availability across countries.
CONCLUSIONS: Cystic fibrosis care in Latin America is heterogeneous. Standardizing protocols, strengthening specialized centers, and improving access to molecular diagnosis and advanced therapies are regional priorities that would enhance timely diagnosis and treatment, as well as patient survival.