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

Abstract

SUMMARYObjectives: 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. KEY WORDS: Epilepsy, Seizure, Precipitant, Intellectual disability.Precipitants for individual seizures are often reported by patients and carers.1-4 However, doubts remain regarding the accuracy of these reports and a reliable method of identifying events or processes that for an individual patient are associated with an increased risk of seizure occurrence would have important implications. Clinically it would create the potential for reducing seizure occurrence by avoiding these events (where possible). Theoretically, investigation of mechanisms by which these events increase seizure risk could provide novel insights into why seizures occur when they do.Focusing on seizure precipitants in epilepsy, existing studies 5-8 have used various methods for data collection and analysis. We sought to develop, describe, and trial a complete set of methods to investigate seizure precipitants FULL-LENGTH ORIGINAL RESEARCH in epilepsy. We sought to address an important shortcoming of existing methods; namely, the use of poorly justified assumptions regarding the time course (or "risk window") over which proposed triggers may act. Furthermore, we sought a clinically focused method that enabled direct investigation of whether one or more carer-or patient-reported triggers are indeed associated with increased seizure likelihood...

Reporting on patient and public involvement (PPI) in research publications: using the GRIPP2 checklists with lay co-researchers

“…Individuals were mentioned in the acknowledgements, but it was unclear if they were PPI contributors. In a study led by Illingworth et al [ 46 ], it was reported that 14 carers of adults with intellectual disability were involved in the development of diaries as a data collection method. However, there was no detail regarding how the carers were consulted and what impact this had on the research overall.…”

Current norms and practices in using a seizure diary for managing epilepsy: A scoping review

“…Documented strategies to enhance patient compliance include sending electronic reminders 7 , 16 , 20 , 24 , 27 and training patients on how to use the diary. 23 , 25 , 28 Despite these strategies, Hoppe et al 27 reported that in their study, reminding participants did not enhance seizure documentation. 27 It is also reported that severe epilepsy, such as drug-resistant seizures and increased seizure frequency, could enhance compliance with diary use as opposed to patients with well-controlled epilepsy who may have little motivation to utilise the diary.…”

“… 5 Paper-based diaries can be completed retrospectively, and it is prone to recall bias, which calls into question the validity of patient-reported data. 28 Written data are difficult to transform into electronic data, making it difficult to visualise trends and relationships between listed factors. 19 …”

“… 16 , 17 , 23 , 24 , 25 , 26 Stressful life events, mood changes, missed or changed medications, altered sleep, alcohol consumption, menstruation, anxiety, bright or flashing lights and constipation are some of the seizure precipitants commonly reported in the literature. 17 , 18 , 22 , 25 , 28 , 30 , 31 Seizure clusters are patterns of seizures that occur multiple times a day, 18 although there is no consensus on the definition of seizure clusters. 18 , 37 Detyniecki et al 16 defined seizure clusters as two or more seizures in 6 h, while Haut et al 38 used an alternative definition, defining seizure clusters as three or more seizures in any given 24-h period.…”

The impact of sleep loss on the facilitation of seizures: A prospective case-crossover study

“…All patients were nevertheless included in the assessment of non-adherence. Fortunately, promising new methods to facilitate the inclusion of patients with intellectual disability in similar studies have recently been suggested (Illingworth et al, 2015). driving.…”