Abstracts

Rationale: In the US, nearly 5.1 million people are diagnosed with epilepsy. While the direct and indirect economic burden of epilepsy has been examined for persons with epilepsy (PWE), the impact on family members, who often serve as caregivers, is not typically studied. This study estimates the economic impact of epilepsy for caregivers, both in terms of healthcare utilization and work productivity. Methods: An economic model was developed using survey responses from 500 caregivers of PWE recruited through the Epilepsy Foundation and Lightspeed Research panels. Demographic data, healthcare utilization (physician outpatient visits, emergency department visits, hospitalizations), and responses to the Work Productivity and Activity Impairment (WPAI) questionnaire were used to estimate direct medical costs and indirect costs, based on work productivity losses, for PWE. For comparison, published sources were used to model both direct and indirect costs for the general population. Caregivers were stratified based on PWE age (adult/child) and disease severity (controlled/uncontrolled, defined as 0 vs. 1+ seizure in prior month). Annual costs were reported in US dollars on a per-caregiver basis. Results were also projected for the total US population of caregivers of PWE. Results: Per-person costs in the general population were estimated at $2,620. For caregivers of PWE, direct medical costs were higher and increased when epilepsy was uncontrolled vs. controlled, and when caring for a child vs. caring for an adult. The highest direct medical costs for caregivers were associated with caring for a child with uncontrolled epilepsy ($8,932) and the lowest were for caring for an adult with controlled epilepsy ($3,558; Table). Using WPAI responses, indirect per-caregiver costs due to presenteeism and absenteeism for the general population were calculated at $5,216. Like direct medical costs, productivity losses increased when the epilepsy was uncontrolled vs. controlled, and when caring for a child vs. caring for an adult. The highest productivity losses were associated with caregiving for a child with uncontrolled epilepsy ($19,557), estimated at 2.67 times higher than the costs of caregiving for an adult with controlled epilepsy ($7,350). Extrapolating to the US population, estimated annual incremental direct medical costs and productivity losses for caregivers of PWE were over $23 billion. Conclusions: While previous cost studies of epilepsy have typically focused on epilepsy patients, the results here suggest that the economic burden to caregivers is also important. Both direct and indirect costs were higher for caregivers of PWE than for the general population, and were greatest for those providing care to children or with frequent seizures. The total estimated direct and indirect costs compare with a previous, widely cited estimate of annual PWE spending of $9.6 billion (in 2004 dollars). Our results indicate that when evaluating the impact of interventions aimed to prevent or reduce epilepsy symptoms, the benefits to both patients and caregivers should be considered. Funding: Funded by Eisai Inc.