(19) Analysis of survival in Cystic Fibrosis for a state of Argentina: Five years 2016-2020

Background: The value of having a local Cystic Fibrosis data registry is essential in order to learn about the progression of CF disease of a specific population group. It also helps to better understand its epidemiologic trends in CF mortality and clinical care.

Objective: To analyze retrospectively data from Provincia de Buenos Aires (PBA, population 17 mill. people) using a standardized approach to data processing and survival calculations between 2016-2020.

Methods: Retrospective study. All CF patients registered in the PBA Reference Centers were evaluated, with data from the Registry. Survival analysis was performed following the Kaplan-Meier methodology. As a criterion, subjects were considered lost to follow-up (censored) if their last report was more than two years prior to the study completion date. Additionally, survival curves differentiated by sex were assessed.

Results: There was a sample of 582 patients (271 female and 311 male), of which 267 were adults. The probability of survival at 99% and 95% was found to be 9.4 years (95% CI: 0.9-11.9) and 18.4 years (95% CI: 17.3-23.8), respectively. At 90% and 80% they were 24.4 years (95% CI: 21.4-27.5) and 29.4 years (95% CI 27.5-31.3), respectively. Median survival was 49.6 years (95% CI: 44.6-). The average age of deceased was 25 years. As reported in the literature, female survival curve was lower than male.

Conclusions: This study constitutes the second reporting period describing survival in patients with CF from PBA. The sample size was 28.5% larger than that first report. Special emphasis was placed on the improvement in the registry of adult patients, observing an increase of 60%. Similar survival values were confirmed to those reported in the previous period

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