Abstracts

Rationale: Caregivers, unlike healthcare providers such as physicians and nurses, are the individuals who typically provide daily care to people with epilepsy. These caregivers, usually family members or friends, are responsible for making treatment decisions, providing support, and managing daily activities. This study was conducted to understand the burden for caregivers providing care to adults and children with epilepsy.Methods: This is an interim analysis of an ongoing cross-sectional survey of 500 caregivers of persons with epilepsy. Caregivers are being recruited through the Epilepsy Foundation, using email blasts, promoting the survey using social media, and posting a link to the survey on their website. The IRB approved survey will assess patient and caregiver demographic characteristics, aspects of epilepsy provider management, epilepsy severity and treatment, and stress-related comorbidities (e.g., insomnia, depression, anxiety). The study will also assess caregiver burden using several validated instruments including the 12-item Short Form Health Survey (SF-12v2), the Work Productivity and Activity Impairment (WPAI) questionnaire, the Bakas Caregiving Outcomes Scale (BCOS), and the Zarit Burden Interview (ZBI). The results will be summarized and relationships between the demographic characteristics, caregiver burden measures, the severity of epilepsy, and other variables will be explored.Results: Interim results from an analysis of 123 completed questionnaires showed that 93.5% (n=115) of caregivers were female with an average age of 47.1 years (SD=11.7). Of these, 82.1% were married and 43.0% reported having less than a college education. Caregivers, on average, have been providing care for 10.7 (SD=9.7) years. The person with epilepsy was diagnosed approximately 10.6 (SD=10.6) years ago, 43.4% were <18 years of age, 53.7% were male, and 64.2% were diagnosed with generalized seizures. Caregivers reported the person with epilepsy experienced an average of 17.6 (SD=28.6) seizures in the past month. Caregivers reported spending on average 79.6 hours per week (SD=57.6) providing care to the person with epilepsy. Since becoming a caregiver, 70.7% of respondents reported experiencing anxiety, 51.2% reported experiencing depression, and 43.1% reported experiencing insomnia. Among the employed, caregivers reported missing on average 5.2 (SD=11.3) hours of work in the past seven days due to caregiving responsibilities. The complete results from the entire sample of 500 epilepsy caregivers will be reported.Conclusions: This will be one of the largest studies of epilepsy caregiver burden in the United States. Results from this survey will serve to enlighten providers, families, and the general public on the overall burden experienced by caregivers of persons with epilepsy, from their perspective and in the real-world setting. Administration and recruitment of the final survey is currently underway.