Abstracts

Rationale: Unmanaged seizure clusters (SC) can result in increased healthcare utilization and may progress to status epilepticus. To evaluate and compare practices in SC management from the perspective of clinicians, caregivers, and patients, 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 from Upsher-Smith Laboratories) in September 2014. SC were defined as ≥2 seizures within 24 h outside the typical pattern experienced in the past 12 months. Over 800 clinicians, caregivers, and patients participated in the survey, which was designed to allow for data collection across many topic areas, including demographics, prior experiences, and approach to clinical practice. Data here focus on SC management and how responses varied among groups. 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%). Most patients and caregivers were generally satisfied with explanations provided by clinicians. However, the survey identified disparity in perception of topics covered, with particularly large patient-clinician gaps for changes in non-seizure medication, injuries/ER visits, seizure impact on patient life, plans for late/missed doses, and diary entries. About half (51%) of clinicians encouraged >75% of patients to use a seizure diary, but only 55% of patients and 62% of caregivers report the patient doing so. In addition, about half (52%) of clinicians reported that 51-100% of patients have an emergency plan, though only 30% of patients reported having one in place. Caregiver results showed that significantly more children have an emergency plan compared with adults (78% vs 31%, P<.05). When asked what typical recommendations are for when a SC occurs, clinicians most commonly responded take a rescue medication (79%), call the doctor’s office (61%), visit the ER (61%) and stay calm (50%). In contrast, patient actions were to stay calm (34%), do nothing (27%), visit the ER (24%), call the doctor (20%), and take rescue medication (20%). Further, about three in ten patients and two in five caregivers used an ER for SC in the past year, with 24% of patients reporting they would initially seek out ER care as their first option.Conclusions: In this survey, SC management was characterized differently by patients and clinicians, suggesting clinical recommendations are not implemented. A worrisome finding is that less than half of patients report having a seizure emergency plan. Further, possible overutilization of ER services and underutilization of rescue treatment may lead to excessive costs of care. These findings identify areas requiring more attention during physician-patient interactions. Support: Upsher-Smith Laboratories, Inc.