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. 2025 Aug;66(8):2954-2965.
doi: 10.1111/epi.18441. Epub 2025 May 5.

Do you have epilepsy, a seizure disorder, or neither? Patients' perception of their diagnosis in an epilepsy clinic

Farnaz Sinaei  1 , Colin B Josephson  1   2   3   4   5   6 , Samuel Wiebe  1   2   3   4   7 ; Calgary Comprehensive Epilepsy Program Collaborators
Collaborators, Affiliations

Do you have epilepsy, a seizure disorder, or neither? Patients' perception of their diagnosis in an epilepsy clinic

Farnaz Sinaei et al. Epilepsia. 2025 Aug.

Abstract

Objective: To explore how people with epilepsy self-characterize their diagnosis as being epilepsy, a seizure disorder, or neither.

Methods: People diagnosed with epilepsy by epileptologists, responded to two questions: "do you have epilepsy?" and "do you have a seizure disorder?". Demographic, clinical and patient-reported outcome measures were extracted from Calgary Comprehensive Epilepsy Program registry. Multivariable multinomial and logistic regression models were used to determine factors associated with self-perception of the diagnosis.

Results: Of 1684 epilepsy patients who answered both questions, 1231 (73.1%) perceived themselves as having epilepsy, 137 (8.1%) a seizure disorder but not epilepsy, 145 (8.6%) neither of the diagnoses, and 171 (10.2%) as not knowing their diagnosis. On multivariate analyses, factors significantly associated with a higher likelihood of self-perception as having a seizure disorder versus epilepsy included having focal epilepsy (relative risk ratio [RRR] = 13.1, 95% confidence interval [CI]: 1.7-102.1), and a higher comorbidity burden (RRR = 1.8, 95% CI: 1.3-2.7), whereas self-perception of having a seizure disorder vs epilepsy was lower in females (RRR = .36, 95% CI: .14-.94) and those taking more antiseizure medications (ASMs) (RRR = .19, 95% CI: .06-.58). Self-perception of having neither diagnosis was significantly more likely in people with focal epilepsy (RRR = 3.1, 95% CI: 1.2-8.3) and a higher comorbidity burden (RRR = 1.6, 95% CI: 1.1-2.4), whereas the likelihood was lower with a longer duration of epilepsy (RRR = .96, 95% CI: .93-.99), taking a higher number of ASMs, (RRR = .14, 95% CI: .04-.51), having more side effects (RRR = .89, 95% CI: .83-.96), a higher self-rated severity of epilepsy (RRR = .26, 95% CI: .14-.49), and if the respondent was the patient as opposed to a proxy (RRR = .24, 95% CI: .07-.85).

Significance: In a clinical setting, clinical characteristics, rather than sociodemographic factors, largely explain how people with epilepsy self-characterize their diagnosis. Markers of higher seizure severity and longer illness duration increase the likelihood of self-perception as having epilepsy.

Keywords: epilepsy; seizure disorder; self‐identification; self‐perception; stigma.

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Conflict of interest statement

F.S. has nothing to declare. C.B.J. has received unrestricted educational grants from UCB Pharma Inc. and Eisai Inc. for work unrelated to this project. S.W. has received unrestricted educational grants on behalf of his institution from UCB Pharma, Paladin Labs, Jazz Pharma, and Eisai for work unrelated to this project and has served on advisory boards of Paladin Labs and Jazz Pharma. He has received speaker's fees from Torrent Pharma and Biopas Labs, for topics unrelated to this project. We confirm that we have read the Journal's position on issues involved in ethical publication and affirm that this report is consistent with those guidelines.

Figures

FIGURE 1
FIGURE 1
Distribution of self‐identified diagnoses and type of responder.
FIGURE 2
FIGURE 2
(A) Statistically significant predictors of self‐perception of “seizure disorder” vs “epilepsy.” (B) Statistically significant predictors of self‐perception of “neither diagnosis” vs “epilepsy.”
See this image and copyright information in PMC

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