Abstracts

Rationale: Nonepileptic seizures (NES), also known commonly as pseudoseizures or psychogenic nonepileptic seizures, comprise up to 30% of patients referred to comprehensive epilepsy centers. A number of terms have been used to describe these spells but there is no general consensus on what the preferred term should be. The differing terminology may be confusing to the clinician and confusing and offensive to the patients. The purpose of this study is to determine the preference of terminology among patients who have been diagnosed with NES by VEEG. Methods: Patients were included if they had a diagnosis of NES or mixed epileptic seizure/NES and were age 18 years or older. Patients were excluded if they were non-English speaking or or had cognitive disabilities and could not answer for themselves. Patients were also excluded if the cause of their nonepileptic events was medical. The patients were then contacted, consented and surveyed by phone. Twenty four terms were rated. The terms were scored on a scale of 1-10 (10 best, 1 worst). Then patients picked a head-to-head favorite of their top 3 highest scored terms. Several other background questions were asked. Results: We were able to enroll 51 of 111 patients. The vast majority were in the pure NES event group (94.1%). Patients found the term seizure confusing to describe something that they were told was not a seizure (70.6%; p=0.0026). The term psychogenic was rated unfavorable by 60.8% (p=0.0004). The top two ranked terms by score and by head-to-head analysis were nonepileptic seizures (mean score = 6.84) and seizure-like events (mean score = 6.6). There was no significant difference between these two terms (p=0.7086). We also analyzed the terms by clustering the noun, adjective and noun-adjective terms. Of the clustered adjectival terms, nonepileptic was the favored term (p=0.00). Of the clustered noun terms, event was the preferred term (p=0.00). When analyzing the terms that were used both in the capacity of a noun or an adjective, seizure was preferred to some form of the root epil- (p=0.00). The actual scored term of nonepileptic event was the number 6th ranked term by score and head-to-head analysis but did not differ significantly from either nonepileptic seizures (p=0.138)or seizure-like events (p=0.2548). Conclusions: Patients with NES have definite preference with regard to the terminology of their disease. There was consistency in the ranking of the top two preferred responses, nonepileptic seizures and seizure-like events respectively. However, when analyzing the clustered terms, nonepileptic was the preferred adjective but the strongly preferred noun term was event. This would yield a preferred compound term of nonepileptic event. Patients find the use of the term seizure confusing for something that they were told was not a seizure. Thus, nonepileptic events may be the preferred term. Terms such as pseudoseizure and psychogenic should be considered antiquated and unfavorable.