ArticleEpilepsia2025
Do you have epilepsy, a seizure disorder, or neither? Patients' perception of their diagnosis in an epilepsy clinic.
Article in Epilepsia, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
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1 citing paper in PubMed.
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4 authors.
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No grant is acknowledged in the PubMed record.
Abstract
objectiveTo explore how people with epilepsy self-characterize their diagnosis as being epilepsy, a seizure disorder, or neither.
methodsPeople 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.
resultsOf 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.
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