Abstracts

Rationale: Optimal communication between patients, caregivers, and healthcare providers is essential to epilepsy management, though researchers acknowledge there are significant gaps. The goal of this study was to qualitatively and quantitatively assess communication gaps. Physician, patient, and caregiver attitudes toward seizure emergencies/seizure actions plans and the use of rescue drugs are detailed here.Methods: The study will include 100 in-office recorded conversations between patients or caregivers and physicians (10 academic epileptologists and 10 community neurologists [5 pediatric and 5 adult each]). Assessment tools include 1) ethnographic analysis of recorded conversations, 2) epilepsy knowledge/behavioral survey, 3) in-home video diaries of patients or caregivers and 4) follow-up interviews. As the study is ongoing, interim data analyses from 15 physicians (5 academic/10 community) and 74 patient or caregiver office visits as of Nov 2014 are presented here.Results: The most common rescue drug discussed in this interim analysis by pediatric physicians was rectal diazepam (42% and 93% of conversations with community and academic physicians, respectively), though individuals revealed a reluctance toward its use. Oral lorazepam was more commonly discussed by adult physicians (28% community, 44% academic conversations). Physicians positioned rescue drugs as “nice to have” rather than a necessity, and tended to use vague language when specifying how or when to use them. There were also inconsistencies regarding the definition for ‘seizure emergency’. Interviews with patients and caregivers reveal that the term ‘seizure emergency’ evokes fear and often becomes conflated with life-threatening ‘911 emergencies.’ Rescue plan discussions took place during 44-50% of community and 80-100% of academic physician conversations, though were brief (average 1.6-2.7 min). The terms 'plans' and 'protocols' were rarely stated explicitly by physicians, with the name of a rescue drug often standing in for the term ‘action plan’. When asked about what is done in the event of a major seizure, patients and caregivers report actions as non-medication based, with a focus on patient safety. In 25-45% of community physician conversations, emergency discussions were limited to the topic of hospital visits. In contrast, there were no academic physicians where ER use was the only emergency plan discussed. Patients and caregivers did not always see the need for a written seizure action plan unless intended for others (eg, schools). No more than a third of physician conversations included the topic of seizure diary use, and some patients/caregivers considered seizure logs burdensome.Conclusions: While physicians discuss rescue medications, the vague definition of a seizure emergency and lack of clear seizure action plans may hinder the appropriate use of rescue medication. These interim data highlight the need for improved communication between physicians and patients/caregivers, guiding informed decisions during a seizure emergency. Support: Upsher-Smith Laboratories, Inc.