SUDEP Action

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Latest research on SUDEP

 

Sudden Unexpected Death in Epilepsy (SUDEP) is now a growth area in epilepsy research around the world.  SUDEP Action works with Epilepsy Australia and SUDEP Aware to provide expert overviews of research and an extensive bibliography 

Publications on SUDEP since 2011 include:

 

Safe and sound? A systematic literature review of seizure detection methods for personal use Jory et al.

Seizure 2016

This paper concludes that Seizure detection devices are at a relatively early stage, and that there is no evidence that any seizure detection device can prevent SUDEP. It also says the development of seizure detection devices offers great potention in management of epilepsy. Chosen as an Editorial Choice article because of it’s importance. Full paper can be accessed free with the above link. The article has also been recognized in Seizure (the official journal of Epilepsy Action), in which it is published, as the Editors Choice. It was awarded this by Dr Mark Reuber, the Editor in-Chief because of its ‘medical or social importance for people with epilepsy and researchers in the fields related to epilepsy.’ You can read the Editor's Commentary here

 

SUDEP checklists in primary care Gales A, Shankar R

RCGP 2016

This study looks at applying the SUDEP and Seizure Safety Checklist to a General Practice Population and highligtes the Learning and outcomes. 

 

After sudden unexpected death in epilepsy: Lessons learned and the road forward  Donner E, J , Waddell, B, Osland, K, Leach, J, P, Duncan, S, Nashef, L, Picot, M, C

Epilepsia 2016

The paper explores the dificulty of navigating the devastating effects of SUDEP, even for experienced clinicians. It looks at the experience of bereaved families and clinicians, derives lessons from published research, highlights areas where more research is needed, and reports on preliminary data from a nationwide study from France.

 

Recognizing and preventing epilesy-related mortality Devinsky, O, Spruill, T, Thurman, D, Friedman, D. 

American Academy of Neurology, 2015

The authors highlight the issues surrounding epilepsy-related deaths, premature mortaility and the misreporting of deaths in America; suggesting steps need to be taken to improve epilepsy management & provide appropriate interventions. 

 

Mortality from Sudden Unexpected Death in Epilepsy (SUDEP) in a cohort of adults with intellectual disability Kiani, R, Tyrer F, Jesu,  A, Bhaumik,  Gangavati1, S, Walker, G, Kazmi, S, Barrett, M

Journal of Intellectual Disability Research 2015

The authors believe that a comprehensive risk management under a multiagency/multidisciplinary framework should be undertaken for all adults with ID and epilepsy in day-to-day clinical practice to reduce mortality in people with ID.

 

Discussing SUDEP: Have we improved?—A retrospective case note analysis  Ross D ,Waddell B, Heath CA

Epilepsia 2015

Study evaluated current clinical practice to discussing SUDEP following publication of the initial audit. A review of patients with epilepsy at a clinic in Tayside found a documented discussion of SUDEP was recorded in 81 (34%) of 240 patients, an improvement in practice. However, the minority of patients are still being informed, with those at higher risk less likely to be informed.

 

Avoiding premature death in epilepsy L Ridsdale

BMJ 2015

Paper argues that deaths from epilepsy could be reduced as they have been for some cancers using screening for risk at general practice.

 

Does intellectual disability increase sudden unexpected death in epilepsy (SUDEP) risk? Young C, Shankar R, Palmer J, Craig J, Hargreaves C, McLean B, Cox D, Hillier R

Seizure 2015

Researchers identified 49 studies which had explored risk factors for SUDEP, of which, approximately 50% considered Intellectual Disability (ID) in the planning stages. Of these studies, 60% found ID was a risk factor for SUDEP. Study found ID definitions and specified standardized mortality rates and impact of institutionalization to be quite poorly presented.

 

Association of prone position with Sudden Unexpected Death in Epilepsy. Liebenthal AJ, Wu S, Rose S, Ebersole JS, Tao JX

Neurology 2015

New systematic review and meta-analysis of 253 SUDEP cases found prone position in 73.3% of SUDEP deaths, whereas nonprone positions were found in 26.7%.  The authors conclude that the prone position is a major risk factor for SUDEP, particularly in patients aged 40 years and younger.  

 

Characteristics of epilepsy patients and caregivers who either have or have not heard of SUDEP. B Kroner et al

Epilepsia 2014

Research from the US published this month seeking professionals to engage in the conversation about SUDEP finds patients and carers in the US are most likely to know about it from the internet

 

Serotonin neurones have anticonvulsant effects and reduce seizure-related mortality.  Buchanan G, Murray M, Hayek N, Richerson G. 

The Journal of Physiology 2014

Researchers who examined the effect of eliminating serotonin neurones on seizures and mortality in mice found that mice that lacked > 99% of serotonin neurones had a lower seizure threshold and increased seizure-related mortality. This model may help determine the relationship between seizures, 5‐HT system dysfunction, breathing and death, which may lead to novel ways to prevent SUDEP

 

Premature mortality in active convulsive epilepsy in rural Kenya: causes and associated factors. Ngugi AK; Bottomley C; Fegan G; Chengo E; Odhiambo R; Bauni E; Neville B; Kleinschmidt I; Sander JW; Newton CR,

Neurology 2014

Mortality in people with active convulsive epilepsy in rural Kenya was 6 times greater than expected. The authors conclude that deaths may be reduced by improving medication taking and prompt management of prolonged seizures and supporting those with cognitive impairment.

 

Patients' safety in the epilepsy monitoring unit: time for revising practices. Rheims S; Ryvlin P

Current Opinion in Neurology 2014

SUDEP and other serious adverse events should be a significant concern for Epilepsy monitoring units. These might be triggered by drug withdrawal and also aggravated by suboptimal care in some epilepsy monitoring units. Current guidelines including continuous supervision is not being followed in some units.

 

Sudden unexpected death in epilepsy: Assessing the public health burden.  David J. Thurman, Dale C. Hesdorffer, Jacqueline A. French.

Epilepsia 2014

Public health scientists found that the public health burden of SUDEP, which has previously been underappreciated, is substantial and deserves much more attention from clinicians, researchers, and the public health community. Comparing years of potential life lost from SUDEP with selected other neurologic diseases, SUDEP ranks second only to stroke.

 

A community study in Cornwall UK of Sudden Unexpected Death in Epilepsy (SUDEP) in a 9 year population sample.  Dr Rohit Shankar, Virupakshi Jalihal, Matthew Walker, Richard Laugharne, Brendan McLean, Emma Carlyon, Jane Hanna, Stephen Brown, Caryn Jory, Mike Tripp, Adrian Pace, David Coxa, Scott Brown

Science Direct 2014

This study identified some of the main risk factors of SUDEP.  It looked at 93 cases of all epilepsy related deaths in Cornwall from 2004 to 2012.  

 

Premature mortality in epilepsy and the role of psychiatric comorbidity: a total population study.  Dr Seena Fazel MD, Achim Wolf MSc, Prof Niklas Långström, Prof Charles R Newton MD, Prof Paul Lichtenstein PhD

The Lancet

This 41 year study found that people with epilepsy are 11 times more likely to die prematurely than the general population.  Researchers studied all individuals born between 1954 and 2009 in Sweden.

 

Detection of generalized tonic-clonic seizures by a wireless wrist accelerometer: A prospective, multicenter study. Beniczky S, Polster T, Kjaer TW, Hjalgrim H,

Epilepsia 2013 

The study which closely monitored 73 patients over 4,878 hours found that portable wrist accelerometer sensors detect generalised tonic-clonic seizures with high sensitivity and specificity.

 

Sudden Unexpected Death in Epilepsy in lamotrigine randomized-controlled trials.  T. Tomson, L J Hirsch, D Friedman, N Bester, A Hammer, M Irizarry, L Ishihara, A Krishen, T Spaulding, A Wamil, R Leadbetter

Epilepsia 2013 

This study found that there was no difference in the rate of SUDEP in patients treated with Lamotrigine compared with other Anti-epileptic drugs.

 

Risk of Sudden Unexpected Death in Epilepsy in patients given adjunctive antiepileptic treatment for refractory seizures: a meta-analysis of placebo-controlled randomised trials. Ryvlin P, Cucherat M, Rheims S

Lancet Neurology 

This meta-analysis found that rates of SUDEP were 0.9 per 1000 person-years in patients who had an AED medication added on to their existing medication compared with 6.9 per 1000 person-years for those that did not.  This provides evidence in favour of active treatment of people with difficult to treat epilepsy.

 

Unifying the definitions of Sudden Unexpected Death in Epilepsy.  L Nashef, E L So, P Ryvlin, T Tomson

Epilepsia 2012

This paper proposes a unified international definition of SUDEP.

 

Sudden Unexpected Death in Epilepsy: people with nocturnal seizures may be at high risk. Lamberts RJ, Thijs Rd, Laffan A, Langan Y, Sander JW

Epilepsia 2012 

This study assessed whether those with sleep-related SUDEP were more likely to have nocturnal seizures

 

Are we discussing SUDEP?- A retrospective case note analysis.
Waddell B, McColl K, Turner C, Norman A, Coker A, White K, Roberts R, Heath CA

Seizure 2012

This study found a  documented SUDEP discussion was noted in 14/345 (4%) cases.  Patients were more likely to be informed of SUDEP if they had potentially modifiable risk factors identified.  There was, however, no documented evidence to suggest that SUDEP is being discussed in the majority of cases.