A method for identifying associations between seizures and possible trigger events in adults with intellectual disability

Abstract

Objectives Precipitants of seizures are often reported by patients and carers, but the accuracy of these claims remains unknown. Focusing on epilepsy in people with intellectual disability (ID), the aims of this work were to (1) identify a set of methods for assessing the validity of reported seizure triggers in individual patients; and (2) undertake an initial assessment of the ease of implementation and acceptability of the method by applying it to a series of cases. Methods Data collection materials (developed with carer involvement) consisted primarily of carer diaries of seizure and trigger occurrences. Statistical analysis of diary data was using the self-controlled case series method. Unlike previously used methods, the analysis method included a means of choosing the time window, following trigger exposure, during which changes in seizure likelihood are to be assessed. Results The method developed was trialed in five adults with ID and epilepsy, who had a range of ID severities and living circumstances. Examples of the application of the method in two of the five cases are presented for illustrative purposes. The method was acceptable to participants and most aspects successfully implemented. Significance This method may be useful for clinicians and researchers wishing to investigate possible triggers in individual patients with epilepsy and ID. It also supports the identification of a statistically defined time window following exposure to a precipitant, during which the risk of developing a seizure is increased. The identification of such a window has value not just in contributing to clinical management, but also in guiding future work into the mechanisms of seizure precipitation.