Pediatr Pulmonol. 2026 Jul;61(7):e71717. doi: 10.1002/ppul.71717.
ABSTRACT
BACKGROUND: Cystic fibrosis (CF) is a rare, multisystem genetic disease requiring early diagnosis and lifelong multidisciplinary follow-up. In many middle-income countries, including Colombia, national CF registries are absent, and epidemiological information largely relies on administrative health data. Although such data do not reflect true clinical prevalence, they enable systematic monitoring of service-based prevalence and diagnostic practice patterns, offering critical insights for health system planning.
METHODS: We conducted a nationwide, observational study using the Colombian Individual Registry of Provision of Health Services (RIPS) from 2015 to 2024. Children and adolescents aged 0-19 years with CF diagnoses (ICD-10 E84.0-E84.9) were identified. Annual crude and age-standardized administrative prevalence rates were estimated using national population projections. Diagnostic test utilization (spirometry, chest CT, pancreatic elastase, genetic testing) was quantified per 100 encounters. Temporal trends were analyzed using LOESS smoothing with 95% confidence intervals.
RESULTS: The age-standardized national administrative prevalence of CF-related healthcare encounters was 5.64 per 100,000. Administrative prevalence was highest in children aged 0-4 years and declined progressively with age. The contributory insurance regime showed the highest service-based prevalence, suggesting disparities in diagnostic access. Temporal patterns revealed a peak in 2018-2019 followed by a decline after 2020, coinciding with COVID-19-related disruptions in pediatric care. Diagnostic utilization was markedly low: spirometry was performed in fewer than 6 tests per 100 encounters annually, chest CT use was sporadic, and genetic testing was minimal before 2018, increasing slightly thereafter.
CONCLUSIONS: Administrative prevalence of CF in Colombia has remained stable over a decade but is accompanied by underutilization of essential diagnostic procedures and inequities across insurance groups. Strengthening diagnostic capacity, standardizing monitoring practices, and improving early detection are urgent priorities. This study provides a scalable framework for CF surveillance in countries lacking national registries.
PMID:42366899 | DOI:10.1002/ppul.71717
