Presentation (CTI)

OBJECTIVES: Beta-thalassemia, the most common form of thalassemia in Brazil, is characterized by defective production of beta-globin, leading to anemia caused by ineffective erythropoiesis. Patients with the most severe forms require regular red blood cell transfusions (RBCT) since childhood for survival. However, data on patient characteristics and travel distances for transfusion therapy within the Brazilian public healthcare system is limited. This analysis aims to fill these gaps assessing travel demands for transfusion treatment.
METHODS: This retrospective observational study analyzed Beta-thalassemia data (ICD-10 classification D56.1) from the Sistema de Informações Ambulatoriais do SUS (SIA-SUS) (Jan 2019 - Dec 2023) to examine patient characteristics and travel distances for procedure 0306020068 (RBCT). The proportion of patients receiving RBCT outside their municipality of residence was calculated and for these records, distances and travel times estimated using OpenStreetMap. Continuous data were summarized by mean, median, standard deviation (SD) and interquartile range (IQR), while categorical data were presented as numbers and percentages. Analyses were performed using Python software, version 3.10.
RESULTS: Between 2019 and 2023, a total of 44,701 procedures associated with ICD-10 D56.1 were performed, with a median of 450 patients being treated annually. The mean (SD) patient age was 26.9 (14.61) years, 56.3% female. The most frequent procedure reported was code 0306020068 (RBCT), representing 33.0% of the procedure’s registries associated with ICD-10 D56.1. Notably, 69.96% of patients had to travel outside their municipalities of residence to receive RBCT treatment. The median (IQR) distance and travel time for intermunicipal RBCT procedures were 78.98 (96.81) km and 1.07 (1.20) hours, respectively.
CONCLUSIONS: This study highlights the significant travel challenges faced by beta-thalassemia patients in Brazil requiring RBCT. A large proportion must travel outside their municipalities for treatment, underscoring the need for new therapeutic options that may reduce transfusion and mobility burdens for patients and caregivers, ultimately enhancing quality of life.