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



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Illingworth, Josephine L 
Xu, Stanley 
Manford, Mark 
Ring, Howard 


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.



Epilepsy, Intellectual disability, Precipitant, Seizure, Adult, Female, Humans, Intellectual Disability, Male, Medical Records, Middle Aged, Precipitating Factors, Prospective Studies, Risk Factors, Seizures, Young Adult

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This study was funded by a grant to HR from Epilepsy Action: The Epilepsy Association. (Registered Charity in England (No. 234343)). SX was supported by NIH/NCRR Colorado CTSI Grant Number UL1 RR025780. HR is a member of the NIHR’s Collaboration for Leadership in Applied Health Research and Care (CLAHRC) East of England at Cambridgeshire & Peterborough NHS Foundation Trust. JI also received funding from CLAHRC East of England during preparation of the manuscript. This article presents independent research with funding from the National Institute for Health Research (NIHR). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health (UK). We would also like to thank Elizabeth Blake-Palmer for her assistance with patient recruitment, and Professor Paddy Farrington for statistical advice.