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

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.