Abstracts

Rationale: In the epilepsy community, there is a lack of consensus on the terminology regarding seizures that require a special treatment or intervention.  New medications are becoming available designed to stop a series of seizures that could progress into status or that cause distressing sequelae.  For clinicians to adequately assess the need for a special treatment, we must understand a person with epilepsy's lexicon of these series of seizures that may need a special treatment.  The purpose of this abstract is to describe how people with epilepsy refer to these series of seizures and their description of the sequelae of these events.  Methods: We used Word Adjacency Graph (WAG) modeling to detect categories and visualize the range of cluster seizure-related topics and their mutual proximity. A subset of 1,178 relevant epilepsy.com queries was fully modeled. We split each query into token words (meaningful words and phrases) and removed stop words (not meaningful functional words, such as ‘and’). The remaining words were considered in sequence to build summary tables of words and two- and three-word phrases. Phrases occurring at least 10 times were used to build a network graph model that was iteratively refined by observing and removing categories of unrelated content. Raw data in the form of user posts were qualitatively analyzed as needed based on the emerging categories.  Results: The term cluster was mentioned greater than 1,000 times while repetitive or repetitive seizures was mention less than 100 times when referring to a series of seizures.  Terms used adjacently with cluster included medication, timing, bad day, and seizure type.  Persons posting described a cluster of seizures  as “back to back seizures,”  “multiple partial seizures,' “a series of seizures,” a “bunch of small seizures,” “2-3 a day,” and “one seizure after another.”   Further posts described the sequelae of these events primarily as significant and long-term cognitive problems that lasted hours to days.    Conclusions: Using a methodology that allowed us to look at all posts on epilepsy.com suggested that the term “cluster” is a common terminology used for events that are different from single seizures. Further, these events have significant and long term sequelae.  There was little discussion of using a medical therapy to abort these events.  This review suggests that a broader patient/clinician discussion regarding events that are not typical and that interrupt day-to-day activities necessary.  Further, a clear lexicon understandable to both the person with epilepsy and their clinician is necessary to enhance these discussions.   Funding: No funding