Abstracts

Rationale: The burden of epilepsy from the perspectives of adolescents with epilepsy and their caregivers has not been well-studied. The purpose of this study is to understand the burden of epilepsy and the extent of agreement from the perspectives of adolescents with epilepsy and their caregivers. Methods: Two online cross-sectional surveys were conducted among adolescents with a diagnosis of epilepsy, currently taking an antiepileptic drug (AED), aged 12 - 17 years, and their caregivers, respectively. Data were collected on demographic and clinical characteristics, validated measures of quality of life and cognition (SF-12 and MOS-COG), prevalence and use of seizure plans, medical resource utilization, and productivity. Descriptive statistics were employed. Results: Data were analyzed from 153 adolescents with epilepsy and their 153 caregivers. Adolescents were 50% male, mean age of 15 years, and 80% white. Comorbidities included 21% ADHD, 15% asthma, 18% migraines, 16% depression, and 14% with physical disability. Subjects (66%) reported monotherapy AED use. High agreement was observed between adolescents and their caregivers, respectively, on having at least 1 seizure in past year (67% vs. 63%); poorly or not controlled (10% vs. 8%); ER visit due to seizure (75% vs. 75%); and hospitalized due to seizure (50% vs. 49%). Adolescents scored below general population mean in cognitive (44% scored 1-3 on MOS-Cog); physical (40% below mean on SF-12) and mental (42% below mean on SF-12) functioning. Adolescents and caregivers also report similarly on fear of having another seizure (50% vs. 55%); increased family stress (31% vs. 41%); incontinence due to seizure (31% vs.30%), missed school due to seizure (75% vs. 84%); and injury/fall/accident due to seizure (29% vs. 27%). Fifty-four percent of caregivers and 48% of adolescents report having a seizure plan. Of those with seizure plans, 78% of caregivers, 88% of adolescents reported always following the plan. Those with plans are more likely to have experienced a loss in seizure control (59% caregivers vs. 64% adolescents) when compared to those without plans (43% caregivers, 50% adolescents). Respondents with a seizure plan were more likely to have visited the emergency room as a result of a seizure (87% caregivers, 88% adolescents), when compared to respondents without a plan (62% caregivers, 64% adolescents). Those with a seizure plan were more likely to report being hospitalized (57% caregivers, 63% adolescents) than those without plans (35% caregivers, 39% adolescents). Conclusions: These findings suggest that seizure control, quality of life, prevalence and use of seizure plans, as well as medical resource utilization and productivity may be sub-optimal in adolescents with epilepsy. These data also indicate that there seems to be relatively high agreement between adolescents and caregivers, which may suggest that they may be utilized more effectively as a dyad in the management of epilepsy.