Abstracts

Rationale: To describe the patient’s experience of living with epilepsy, including the occurrence of disease-related signs and symptoms and the impacts on daily life at different stages of the disease course. Methods: Qualitative, semi-structured interviews were conducted in-person with adults with focal epilepsy at different stages of illness defined by number of years with epilepsy diagnosis: early (diagnosed = 1 year ago), middle (diagnosed 1 -5 years ago), and late (> 5 years since diagnosis). Patients also had varying seizure frequency and treatment experience. Patients were asked to describe the symptoms and functional impacts that they have experienced related to epilepsy. The number of spontaneous and prompted mentions of specific symptoms and impacts was recorded. Patients were asked to rate the symptoms and impacts that they experienced with a disturbance rating on a scale of 0 (not at all) to 10 (extremely), indicating the degree to which each concept “bothered” them. Results: Sixty-two patients (ages 18 – 60 years, mean: 37, 73% female) were interviewed. Nineteen were in the early stage cohort, 17 were in the middle stage cohort, and 26 were in the late stage cohort. Symptoms reported with the highest frequency and highest disturbance ratings from patients across all cohorts included twitching/tremors (80% of patients reporting; average disturbance (AD)=5.3), confusion (78%; AD=7.8), difficulty talking (75%; AD=8.1), impaired/loss of consciousness (70%; AD=6.8), stiffening (65%; AD=5.4), déjà vu (62%; AD=5.1), difficulty remembering (60%; AD=8.5), and dizziness/light-headedness (58%; AD=6.4). The high frequency/high disturbance daily impacts of epilepsy included inability to drive (74%; AD=7.1), limited ability to work and/or go to school (61%; AD=6.7), limitations on leisure and social activities (58%; AD=6.3), and memory loss (47%; AD=8.4). While disease experiences among cohorts were similar, some heterogeneity across patient subgroups was observed. Middle and late cohorts were more likely to report aura, difficulty talking, difficulty concentrating, and headaches compared to the early cohort. Furthermore, middle and late cohorts generally mentioned a greater number of concepts with higher disturbance ratings than the early cohort. Conclusions: Adults with focal epilepsy report a wide range of highly disturbing symptoms and impacts on daily life. These results illustrate the complexity of disease confirmed by patients who represent different stages of epilepsy based on number of years with epilepsy diagnosis. This underscores the need to consider these experiences when developing patient-reported outcome measures for use in clinical trials. It may be useful to tailor measures of patient experiences to the patient’s stage of disease. Funding: Eisai, Inc.