Epilepsy Socioeconomic Impact in a Tertiary Center in Brazil From the Patient Perspective

Background This study aimed to evaluate the direct and indirect annual costs of epilepsy from the perspective of patients with epilepsy treated at a public tertiary center situated in Rio de Janeiro, Brazil. Methods A cross-sectional cost-of-illness study was conducted, using a bottom-up approach based on interviews and records of 166 outpatients with confirmed diagnoses of epilepsy. Direct costs included expenses related to treatment, and transportation, while indirect costs encompassed productivity losses due to morbidity and mortality, assessed through the human capital approach and caregivers. Results The majority of patients in the sample had refractory epilepsy (68.1%) and were on polytherapy (43.98%). The average per capita income of the sample was USD 434,90 per month, and 28.3% of the individuals were unemployed. The total costs amounted to USD 8,243.10 per patient per year, with 76.95% attributed to indirect costs, 23.05% to direct medical costs, and 2.31% to non-medical costs. The primary cost contributors included unemployment (30.42%), caregiver expenses (22.41%), and antiseizure medications (20.30%). The majority of patients reported purchasing all their medications (62.43%). The total out-of-pocket health expenses amounted to USD 2,090.10 per patient per year, with medications accounting for 90.89% of the expenses and transportation for 9.11%. Conclusions In addition to unemployment as the main cost driver, the patients incurred catastrophic spending on medications. Even though treated in a public service, out-of- pocket health expenses made up 40.04% of the average per capita income of the sample and 12.85% of the Brazilian GDP per capita in 2021. The significant patient expenditures may contribute to poor adherence to epilepsy treatment, which can exacerbate the disease and lead to increased seizure frequency. This, in turn, reduces their ability to earn income, contributing to the rise in indirect and intangible costs.