Comparing Perceptions of the Impact of Seizure Clusters Among Clinicians, Patients, and Caregivers

Objective: To compare perceptions of seizure cluster (SC) burden between clinicians, caregivers, and patients with SC (≥2 seizures/24h outside patient’s typical seizure pattern).Background: Few data are available addressing SC impact on quality of life.Design/Methods: The SC Burden of Illness US survey was conducted online by Harris Poll for The Epilepsy Foundation in September 2014. Data presented focus on general burden of seizure disorders and SC specifically. Agreement questions allowed one of four responses: strongly disagree, somewhat disagree, somewhat agree, or strongly agree. Raw data were weighted to achieve representativeness within respondent populations. Statistical comparisons were determined by t-test (95[percnt] confidence level).Results: Respondents included 259 adult SC patients, 263 caregivers (of children [35[percnt]]; adults [65[percnt]]), and 339 clinicians (of children [41[percnt]]; adults [59[percnt]]). Nearly half of patients (47[percnt]) and caregivers (48[percnt]) strongly agreed seizure disorder prevents the patient from doing things other people can vs. 23[percnt] of clinicians ( P P P P P P P u003c.05).Conclusions: Survey responses between clinicians and patients/caregivers showed significant disconnect in perceived impact of SC. By elucidating areas of discord, physicians may be made aware of differences in order to optimize care and improve trust and communication.Survey Support: Unrestricted grant from Upsher-Smith Laboratories, Inc. Disclosure: Dr. Wheless has received personal compensation for activities with Lundbeck, Questcor Pharmaceuticals, Cyberonics, Eisai Inc., and Supernus. Dr. Penovich has received personal compensation for activities with UCB Pharma as a speaker and advisory board member, and with GlaxoSmithKline Inc., and Upsher-Smith Laboratories Inc. as a speaker. Dr. Buelow has nothing to disclose. Dr. Sirven has received personal compensation for activities with UCB, Acadia, and Upsher-Smith. Dr. Sirven has received research support from Neuropace Inc.