INTRODUCTION: In Brazil, people with CF are identified through the National Neonatal Screening Program and referred to a public CF center in the National Healthcare System (SUS). The SUS databases (DATASUS) include the Hospital Admissions Information System (SIH) and Outpatient Procedures Information Systems (SIA). The Brazilian CF Registry included 3152 people with CF in 2020, and it has been an important tool to improve disease awareness; however, it does not provide evidence on the health-care resource utilization (HCRU) associated with CF.
OBJECTIVE: To use DATASUS to describe the demographic characteristics and HCRU of people with CF in Brazil.
METHODS: A retrospective, cross-sectional, descriptive study was conducted using the SIH and SIA databases from DATASUS from 2015 through 2019. For each of the annual cross-sectional analyses, the inclusion criterion for the SIH database was patients with ICD-10 codes for CF; for the SIA database, in addition to ICD-10 codes, patients were required to have received >1 prescription for dornase alfa, pancreatic enzymes, or inhaled tobramycin, in that year. Demographic characteristics were reported from the SIA database. Outcomes from the SIH database, including hospitalization, length of stay, procedures during hospitalization, lung transplant, and deaths, were analyzed for each study year. Because the 2 databases are not linked, annual hospitalization rates were calculated using the total number of hospitalizations from the SIH database divided by the total number of people with CF from the SIA database.
RESULTS: The number of people with CF in the SIA database increased from 3737 in 2015 to 4048 in 2019, which is generally comparable to the total number of people in the registry. Across annual cross-sectional analyses, the proportion of people with CF aged <12 years comprised ≈49% of the total CF population, ≈52% were male and ≈48% were female, and ≈49% were from the Southeast region of Brazil. The total number of hospitalizations in the SIH database increased from 1300 in 2015 to 1508 in 2019. Across the annual analyses, people with CF aged <12 years accounted for ≈45% to ≈52% of the hospitalizations. The majority of hospitalizations (>80%) were due to a pulmonary manifestation. Across the annual cross-sectional analyses, the annual hospitalization rate (AHR) and mean (SD) length of stay (LOS) in days remained stable between 2015 (AHR, 0.35; LOS [SD], 13 [11]) and 2019 (AHR, 0.37; LOS [SD], 13 [9]). The proportion of people with lung transplants reported in the database increased from 0% in 2015 to 0.27% in 2019. The number of deaths in the hospital has remained stable over time: ≈2% in each year.
CONCLUSIONS: The number of people with CF in the National Healthcare System is broadly similar to that in the Brazilian CF registry. The CF population in Brazil has a high rate of hospitalizations and a substantial length of stay, which highlights the considerable burden of CF on the public healthcare system.
