Perfil epidemiológico e assistencial das internações para o tratamento medicamentoso da osteogênese imperfeita no Brasil: um estudo ecológico de 2014 a 2023

Abstract

Introduction: Osteogenesis imperfecta (OI) comprises a group of rare, inherited skeletal dysplasias characterized by bone fragility and susceptibility to fractures. In Brazil, OI is covered by the National Policy for Comprehensive Care for People with Rare Diseases, which aims to ensure comprehensive care within the Unified Health System (SUS). Nevertheless, a substantial gap in epidemiological data persists, hindering assessment of whether public policies and delivered care are adequate. Objective: To characterize hospital admissions for drug therapy in OI in Brazil from January 1, 2014, to December 31, 2023, using data from SIH/SUS (Hospital Information System), CNES (National Registry of Health Establishments), and IBGE (Brazilian Institute of Geography and Statistics). Methods: Descriptive quantitative ecological study with a population-based design and time-trend analysis of secondary data from the hospital production database, available on DATASUS. Results: There was an upward increase in admissions until 2019, an abrupt decline in 2020, and partial recovery in 2021–2023; a similar pattern was observed for the total authorized amount for AIHs (Hospital Admission Authorizations). Admissions were geographically restricted to states (UFs) hosting Reference Centers for OI (CROI) and were unevenly distributed across regions, with higher concentration in the Northeast, South, and Southeast. In the analysis by state of residence, 88.7% of admissions involved patients living in states with a CROI. The annual mean rate per million inhabitants was higher in states with a CROI. Care indicators were consistent with elective, short-stay admissions and low in-hospital mortality. Conclusion: Over the study period, the hospital component of drug therapy for OI within SUS was influenced by service availability, network organization, and the concentration of specialized services, with marked regional inequalities. Strategies such as regionalizing and expanding reference centers, interstate referral-flow agreements, and integration of information systems may improve equity and efficiency in the care of people with OI.