Reliability of Seizure Diaries in Adult Epileptic Patients

Abstract

Daily diaries are used widely in neurologic research and clinical practice to assess alterations in seizure frequency among patients with epilepsy. However, no formal tests of the reliability of this data collection method have been performed. We investigated the reliability of seizure recall in adult patients participating in a longitudinal study of stress, mood and seizure frequency. Patients maintained daily diaries for 10–36 weeks. The reliability study entailed completion of a single additional diary on the evening of a randomly selected day with reference to the preceding day. This design produced two diaries, completed 1 day apart, for the same 24-hour period. Measuring reliability with the Pearson correlation coefficient, overall reliability of seizure recall was 0.95 and was not markedly influenced by the subjects'' sociodemographic characteristics, neurological or psychological status. In sum, the assumption in the literature that the daily diary is a reliable method for securing data on seizure counts appears warranted.

Smartphone applications for seizure management

“…47 On the other hand, it was perhaps not surprising that the seizure diary was the most utilised tool among the reviewed applications. Keeping seizure diaries has long been recommended as a useful intervention for epilepsy patients, 48 and electronic diaries in particular serve to highlight some of the unique advantages of smartphone technology over more traditional methods of epilepsy management. These include but are not limited to improved accessibility and storage, remote data-sharing capabilities and the ability to generate automated graphs for better appraisal of seizure control.…”

Dissociative experiences in epilepsy: Effects of epilepsy-related factors on pathological dissociation

“…The reported seizure frequency and differentiation between epileptic seizures and PNESs may be confounded because of the reliance on reports by the patients and/or their carers in out patient settings. In general, patients' recognition and reporting of epileptic seizures and PNESs are considerably reliable [41] in spite of some limitations [42]. These factors would not have had a major influence because of our methods of estimating the seizure frequency.…”

Early follow-up data from seizure diaries can be used to predict subsequent seizures in same cohort by borrowing strength across participants

“…As a consequence, time stamping of responses is not available. Although paper diary studies have demonstrated reliability in epilepsy [3], more recent studies have raised concerns regarding the potential for study participants to back-fill diary records [20–22]. The study is further limited by the modest sample size used for model development.…”

“…Seizure prediction strategies include two major approaches: electrophysiological monitoring [2] and diary-based prediction [3]. Premonitory symptoms [4,5], triggers for attacks [6–10], perceived self-control [11–14], and self-prediction [9,10] can be recorded in patient diaries and used to predict the likelihood of a seizure over a brief period of follow-up.…”