Esclerose lateral amiotrófica: caracterização clínica e epidemiológica de pacientes atendidos em um hospital universitário

Abstract

Amyotrophic Lateral Sclerosis (ALS) is a rare and progressive neurodegenerative disease, whose clinical, functional, and social impact is exacerbated by the absence of a cure and the limited effectiveness of available treatments. In this context, the present study aimed to analyze the sociodemographic, clinical, and epidemiological profile of ALS patients in the Triângulo Mineiro region of Brazil, with emphasis on the relationship between pesticide exposure and disease incidence, as well as to evaluate the effectiveness of specialized home care. The sample consisted of 70 patients diagnosed with ALS and monitored by the Home Care Service of the Federal University of Uberlândia between 2018 and 2023. The majority of patients were male (58.2%), with a mean age of 60 years, low educational attainment, and household income below two minimum wages. Approximately 23.5% had direct or indirect occupational links to agricultural activities, and 61.8% lived in rural or peri-urban areas. Statistical analysis revealed a significant association between rural occupations and ALS diagnosis (p < 0.0001), suggesting a potential correlation between occupational pesticide exposure and the disease. Data analysis indicated that the predominant ALS form was familial (34%), with limb-onset phenotype in 60% of cases and a mean survival of 38 months after symptom onset. The average diagnostic delay was 21.9 months. Death was the outcome in 63.6% of the cases. The "Melhor em Casa" Home Care Program played a central role in patient care, providing multidisciplinary support and resources such as gastrostomy, oxygen therapy, medication management, and palliative care. The findings highlight the significant role of environmental and occupational factors in ALS incidence and underscore the urgent need for public policies focused on pesticide regulation, rural worker protection, and the expansion of specialized home-based care.