Abstracts

Rationale: Little is known on the overall impact of seizure clusters (SC). To compare perceptions of patient burden among clinicians, caregivers, and patients when managing seizure clusters (≥2 seizures within 24 h outside the typical pattern experienced in the past 12 months), a large survey was conducted.Methods: The SC Burden of Illness US survey was conducted online by Harris Poll on behalf of The Epilepsy Foundation (unrestricted grant support from Upsher-Smith Laboratories) in September 2014. Over 800 clinicians, caregivers, and patients participated in the survey, which was designed to allow for abundant data collection across a wide range of topic areas, including demographics, prior experiences, and approach to clinical practice. Survey data presented here focus on questions evaluating general burden of SC, with a comparison of how responses varied among groups. Agreement statements in the survey allowed one of four responses: strongly disagree, somewhat disagree, somewhat agree, or strongly agree. Raw data were weighted as needed to achieve representativeness within the respective respondent populations. Statistical comparisons were determined by a standard t-test of column proportions and means at the 95% confidence level.Results: Of 861 respondents, 259 were adult SC patients (age ≥18 years), 263 were caregivers (of children [35%] or adults [65%]), and 339 were clinicians treating children (41%) or adults (59%). Nearly half of patients (47%) and caregivers (48%) strongly agreed that seizure disorder prevents the patient from doing things other people can do compared with only 23% of clinicians (P<.05 for both). In addition, though only about half of patients (52%) and caregivers (54%) felt patients with SC can achieve a fulfilling life, nearly three quarters of clinicians (74%) felt a fulfilling life was possible (somewhat agree and strongly agree combined; P<.05 for both). Significantly more patients than clinicians strongly agreed that SCs get in the way of the things patients need to do each day (32% vs 14%; P<.05) as well as increased emotional (43% vs 29%; P<.05) and financial (42% vs 15%; P<.05) burden. Though significantly more clinicians somewhat or strongly agreed that patients are embarrassed to talk about their seizure disorder compared with patients or caregivers (58% vs 38% and 37%; P<.05), the percentage of patients and caregivers reporting strong agreement (17% and 13%) was significantly higher than clinicians (7%; P<.05).Conclusions: Across many survey questions considered here, responses between clinicians and patients/caregivers showed a significant disconnect in the perceived impact of SC, in some cases with a more optimistic view by clinicians. By elucidating areas of discord among these groups, opportunities to optimize patient care and improve communication may be identified. Support: Upsher-Smith Laboratories, Inc.