Abstract
There have been few studies of agreement between seizure descriptions obtained from patients and observers. We investigated 220 patients and observers who completed structured questionnaires about patients’ semiological seizure features at the initial clinical visit. Inter‐rater reliability was assessed using Cohen’s kappa and indices of positive and negative agreement. Patients and observers had excellent agreement on the presence of memory impairment and generalized shaking and stiffness during seizures. In addition, patients under‐reported seizure descriptions more easily observed externally, whereas observers under‐reported change in patient location at seizure end. These findings may guide interpretation of clinical histories obtain in epilepsy care.
Highlights
Patients’ first-person descriptions of their seizures are often used clinically in diagnosis and treatment of epilepsy
If the subject had a normal EEG and MRI, their data were submitted to an independent adjudication committee of 5 experts, and subjects were rejected if the seizure description did not suggest a> 80% certainty that the events were epileptic seizures
The proportion of positive agreement measures agreement in which both patients and observers respond “Yes,” and proportion of negative agreement measures agreement where both respond “No.” We considered inter-rater reliability to be excellent only if j, ppos, and pneg were all >0.8
Summary
Patients’ first-person descriptions of their seizures are often used clinically in diagnosis and treatment of epilepsy. Accurate seizure descriptions are essential for classification of epileptic seizures and clinical decision-making, and can give indications about the severity and localization of seizures.[1,2,3,4] Impairment of conscious awareness, responsiveness, and behavior during seizures can further adversely affect patients’ quality of life including driving safety, employment, social ties, and school performance.[5] Impaired cognition during and following seizures may interfere with reliable reporting. Annals of Clinical and Translational Neurology published by Wiley Periodicals, Inc on behalf of American Neurological Association.
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