Abstract
Our objectives were to compare people with epilepsy (PWE) who died of sudden unexpected death in epilepsy (SUDEP) with live controls using the risk factor items of the SUDEP and Seizure Safety Checklist. All 48 SUDEPs of 93 epilepsy deaths which occurred in Cornwall UK 2004–2012 were compared to 220 live controls using the SUDEP and Seizure Safety Checklist, an evidenced based tool used to communicate person centered risk of SUDEP to PWE. The odds ratio for having a specific factor in those who died was compared to controls and ranked according to P value using a sequential Bonferroni correction for multiple comparisons. Of the 17 modifiable and non-modifiable risk factors analyzed 9 were statistically significant of which 7 are potentially modifiable. Well known modifiable factors such as nocturnal monitoring, compliance and sleeping position featured prominently in the risk association. This is the first case control study exploring the risk factors for SUDEP since 2009. The findings are compared to the current considered risk factors as identified in a major recent review. The study further validates certain SUDEP risk factors. It highlights that the majority of risk factors strongly associated with SUDEP are potentially modifiable. There is an emerging profile to rank the risk factors. It furthers the evidence to use structured risk assessment and communication tools such as the SUDEP and Seizure Safety Checklist in daily clinical practice. It highlights key areas for a person centered discussion to empower PWE to mitigate risk.
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Professor Torbjorn Tomson Department of Clinical Neuroscience, Karolinska Institutet, Stockholm, Sweden.
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JH, CN, FF, and RL report no conflicts. RS has received institutional and research support and personal fees from UCB, Eisai, Janssen, Lilly, GSK, Servier, Astra Zeneca and Desitin outside the submitted work. MW has received institutional and personal fees from Eisai and UCB. BMcL has received research support and personal fees from Eisai, UCB, GSK and Desitin outside the current work.
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All procedures involved in this study involving human participants were in accordance with the institutional and national research committees and with the 1964 Helsinki declaration and its later amendments. For this retrospective study formal consenting was not required.
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Shankar, R., Walker, M., McLean, B. et al. Steps to prevent SUDEP: the validity of risk factors in the SUDEP and seizure safety checklist: a case control study. J Neurol 263, 1840–1846 (2016). https://doi.org/10.1007/s00415-016-8203-3
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DOI: https://doi.org/10.1007/s00415-016-8203-3