Has the Time Come to Stratify and Score SUDEP Risk to Inform People With Epilepsy of Their Changes in Safety?

Frontiers in Neurology
Rohit ShankarJosemir W Sander

Abstract

Recent publication of the American Academy of Neurology SUDEP guidance highlighted the importance to American clinicians of making people with epilepsy aware of SUDEP risk. It is the first guideline to do this in the United States. It follows precedent set out in the UK by National Institute of Clinical Excellence in 2004. While a significant achievement, the lack of clarity of how to deliver this guidance in an enduring and person-centered manner, raises concerns on how its long-term effectiveness in risk mitigation. Shared decision-making with an emphasis on delivering person-centered communication to foster self-management strategies is increasingly recognized as the ideal model of patient-clinician communication in chronic diseases such as epilepsy. The tension between delivering evidence-based risk information, yet, tailoring it to the individual is complex. It needs to incorporate the potential for change not only in seizure factors but also other health and social factors. Safety advice needs to be dynamic and situation sensitive as opposed to a "one off" discussion. As a significant minority of people with epilepsy have drug-resistant seizures, the importance of keeping the advice contextual at different intervals of th...Continue Reading

References

Oct 27, 2012·Seizure : the Journal of the British Epilepsy Association·B WaddellC A Heath
Aug 22, 2013·Seizure : the Journal of the British Epilepsy Association·Rohit ShankarBrendan McLean
Mar 19, 2014·Seizure : the Journal of the British Epilepsy Association·Rohit ShankarScott Brown
Jun 7, 2014·Epilepsia·David J ThurmanJacqueline A French
Sep 2, 2015·The British Journal of General Practice : the Journal of the Royal College of General Practitioners·Rohit ShankarJane Hanna Obe
Dec 24, 2015·Frontiers in Neurology·Jennifer L NovakChristopher M DeGiorgio
Jul 20, 2016·The Cochrane Database of Systematic Reviews·Melissa J MaguireSarah J Nolan
Feb 22, 2017·Epileptic Disorders : International Epilepsy Journal with Videotape·Rohit ShankarTorbjörn Tomson
Apr 4, 2018·European Journal of Neurology : the Official Journal of the European Federation of Neurological Societies·R ShankarJ W Sander

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Citations

Aug 24, 2018·Current Treatment Options in Neurology·Lance Watkins, Rohit Shankar

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Software Mentioned

EMIS Web
Checklist
SUDEP
EpSMon

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