Morbidity and Mortality Among People Living With HTLV‐1: A 30‐Year Retrospective Analysis in a Brazilian Cohort

HTLV-1 infection is a chronic condition associated with the development of malignancies, inflammatory, and neurological disorders. In this study, the causes of hospitalization and mortality were assessed in a cohort of 508 individuals living with HTLV-1 followed over a 30-year period. Overall mortality was 8.5% in this population and increased to 15% among patients with HTLV-1-associated myelopathy/tropical spastic paraparesis (HAM/TSP), a major neurological syndrome characterized by motor, sensory, and urinary dysfunction. Hospitalization was required by 147 participants of the cohort (28.9%), and this increased to 40.2% (121 of 301) among those with HAM/TSP. Patients were admitted at least once, with a mean of two admissions per patient. Hospitalization was associated with HAM/TSP, particularly the degree of motor disability and HIV coinfection. Infectious diseases were the leading cause of both hospitalization (66.7%) and death (69%), most commonly urinary tract infections, pneumonia, and infected pressure ulcers. In addition, mortality was also directly related to the intensity of motor impairment and the number of hospitalizations. HAM/TSP was associated with an increased risk of hospitalization and readmission. Additionally, greater motor impairment was linked to higher risks of both hospitalization and mortality, while elevated HTLV-1 PVL was found to contribute to an increased risk of death. In conclusion, these findings highlight the importance of prevention and timely management of secondary infections to reduce morbidity and mortality in individuals living with HTLV-1, particularly those affected by HAM/TSP, which frequently present urinary dysfunction and pressure ulcers.