Do you have epilepsy, a seizure disorder, or neither? Patients' perception of their diagnosis in an epilepsy clinic
Bibliographic record
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.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.001 | 0.008 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.001 | 0.001 |
| Open science | 0.000 | 0.001 |
| Research integrity | 0.000 | 0.001 |
| Insufficient payload (model declined to judge) | 0.003 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".