Socio-demographic and therapeutic profile of people living with thalassemia in Brazil between 2012 and 2022: A cross-sectional study

OBJECTIVE: To outline the sociodemographic and therapeutic profile of individuals with thalassemia in Brazil between 2012 and 2022, by analyzing data from the Ministry of Health on outpatient care, hospitalization, and mortality records. METHODS: This descriptive, cross-sectional study utilized secondary data from the Outpatient, Hospital, and Mortality Information Systems of the Ministry of Health on patients diagnosed with thalassemia (ICD-10 D56). Analyzed variables included demographics (sex, age, race/ethnicity), geographic location (residence and treatment site), and clinical outcomes (procedures, hospitalizations, and deaths). RESULTS: In 2022, an estimated 662 patients received outpatient treatment in the Brazilian Unified Health System (SUS), with a predominance of young adults, women, and individuals self-identified as White, who were mostly concentrated in the southeastern and southern regions of the country. Red blood cell transfusion was the most frequently performed outpatient procedure during the period. There were 1278 hospitalizations, mainly of children aged 0-9 years. A total of 153 deaths were recorded, primarily among people aged 50 years or older. The findings characterize the patient profile, identify significant travel challenges to receive treatment, and suggest potential underreporting within reference institutions. CONCLUSION: It is essential to improve data recording in public databases to support specific health policies and ensure comprehensive, equitable, and continuous treatment for people living with thalassemia in Brazil.