High precision in epileptic seizure self-reporting with an app diary

Abstract

People with epilepsy frequently under- or inaccurately report their seizures, which poses a challenge for evaluating their treatment. The introduction of epilepsy health apps provides a novel approach that could improve seizure documentation. This study assessed the documentation performance of an app-based seizure diary and a conventional paper seizure diary. At two tertiary epilepsy centers patients were asked to use one of two offered methods to report their seizures (paper or app diary) during their stay in the epilepsy monitoring unit. The performances of both methods were assessed based on the gold standard of video-EEG annotations. In total 89 adults (54 paper and 35 app users) with focal epilepsy were included in the analysis, of which 58 (33 paper and 25 app users) experienced at least one seizure and made at least one seizure diary entry. We observed a high precision of 85.7% for the app group, whereas the paper group’s precision was lower due to overreporting (66.9%). Sensitivity was similar for both methods. Our findings imply that performance of seizure self-reporting is patient-dependent but is more precise for patients who are willing to use digital apps. This may be relevant for treatment decisions and future clinical trial design.