title: Perspectives on seizure clusters: Gaps in lexicon, awareness, and treatment.
abstract: Seizure clusters in epilepsy can result in serious outcomes such as missed work or school, postictal psychosis, emergency room visits, or hospitalizations, and yet they are often not included in discussions between health-care professionals (HCPs) and their patients. The purpose of this paper was to describe and compare consumer (patient and caregivers) and professional understanding of seizure clusters and to describe how consumers and HCPs communicate regarding seizure clusters. We reviewed social media discussion sites to explore consumers' understanding of seizure clusters. We analyzed professional (medical) literature to explore the HCPs' understanding of seizure clusters. Major themes were revealed in one or both groups, including: communication about diagnosis; frequency, duration, and time frame; seizure type and pattern; severity; and self-management. When comparing discussions of professionals and consumers, both consumers and clinicians discussed the definition of seizure clusters. Discussions of HCPs were understandably clinically focused, and consumer discussions reflected the experience of seizure clusters; however, both groups struggled with a common lexicon. Seizure cluster events remain a problem associated with serious outcomes. Herein, we outline the lack of a common understanding and recommend the development of a common lexicon to improve communication regarding seizure clusters.
authors.affiliation: Epilepsy Foundation of America, Landover, MD, United States. Electronic address: jbuelow@iupui.edu.
authors.forename: Janice M
authors.initials: JM
authors.lastname: Buelow
authors.affiliation: Beth Israel Deaconess Medical Center, Boston, MA, United States.
authors.forename: Patricia
authors.initials: P
authors.lastname: Shafer
authors.affiliation: Montefiore Medical Center, Bronx, NY, United States.
authors.forename: Ruth
authors.initials: R
authors.lastname: Shinnar
authors.affiliation: Indiana University School of Nursing, Indianapolis, IN, United States.
authors.forename: Joan
authors.initials: J
authors.lastname: Austin
authors.affiliation: UCLA Seizure Disorder Center, Los Angeles, CA, United States.
authors.forename: Sandra
authors.initials: S
authors.lastname: Dewar
authors.affiliation: The Ohio State University, Columbus, OH, United States.
authors.forename: Lucretia
authors.initials: L
authors.lastname: Long
authors.affiliation: Virginia Commonwealth University Children's Pavilion, Richmond, VA, United States.
authors.forename: Kathryn
authors.initials: K
authors.lastname: O'Hara
authors.affiliation: Santilli Global, LLC, Sunnyvale, CA, United States.
authors.forename: Nancy
authors.initials: N
authors.lastname: Santilli
mesh_terms: D001364:Awareness; D017028:Caregivers / Q000523:psychology*; D003142:Communication; D004827:Epilepsy / Q000175:diagnosis / Q000523:psychology*; D007722:Health Knowledge, Attitudes, Practice; D006282:Health Personnel; D006760:Hospitalization; D006801:Humans; D020407:Internet; D015995:Prevalence; D012640:Seizures / Q000453:epidemiology* / Q000523:psychology; D012648:Self Care; D061108:Social Media; D018875:Vocabulary, Controlled
keywords: Epilepsy; Seizure; Seizure cluster