Abstracts

Rationale: Adolescents with epilepsy frequently have poor knowledge about their disease. This is associated with low self-efficacy and poor adherence to treatment regimens. Successful transition toward adult neurology care depends on accurate knowledge of epilepsy and its treatments. We aimed to improve epilepsy knowledge among adolescents with epilepsy and their parents. Methods: As part of a larger study on building resilience among adolescents with epilepsy, patients with epilepsy (ages 11-to-17 years) whose cognitive abilities allowed independent completion of questionnaires, and their parent, were recruited. Patients and their parents attended a didactic session accompanied by discussion and teaching videos aimed at improving their knowledge of epilepsy and its treatment. All sessions were taught by an experienced epilepsy educator. Patients and parents independently took a test of epilepsy knowledge several weeks to months before and again immediately after the session. Knowledge scores before and after session were compared using a paired t-test for both adolescents and parents. Relationships between parent and adolescent scores, as well as scores with measures of epilepsy severity and socioeconomic status were evaluated using correlations and independent sample t-tests. Results: Sixty-five adolescents (57% male) and their parents (82% mothers) completed the study. Fifty-seven percent had focal epilepsy, 21% had generalized epilepsy and 6% had mixed epilepsy syndromes. Only 37% were seizure-free and 23% had at least weekly seizures. On average, adolescents' epilepsy knowledge test scores did not change after the teaching session (p=0.7), but their parents' scores improved significantly (p<0.001). Despite this, on the course evaluation forms, 85% of adolescents and 93% of parents reported their knowledge of epilepsy and related issues increased as a result of the program. Adolescents' scores were not predicted by their parents' scores (p=0.25). Socioeconomic status, duration of epilepsy, seizure burden, and number of anticonvulsant medications were not related to adolescents' or parents' epilepsy knowledge (p>0.08 for all relationships). Conclusions: Adolescents often have incomplete knowledge about their epilepsy. This lack of knowledge is independent of their parents' epilepsy knowledge, socioeconomic status, or their epilepsy severity. To be effective, educational programs for adolescents with epilepsy (and/or assessments of those programs) may need to be constructed and taught differently from programs designed for their parents.