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Communication – the validity of perceived barriers to discussion

[Part 3: Challenges; Waddell B]



In 2006 Morton et al published the first large-scale study on the practice of SUDEP discussion. This demonstrated that only 5% of UK neurologists informed all their patients about SUDEP (Morton et al., 2006); a result which contrasted with the belief at the time that 'most neurologists in the United Kingdom already told their patients about SUDEP' (Groner, 2006). It has since become clear that UK neurologists are not alone in their practice. When neurologists in Italy, USA and Canada, Michigan and Brazil have been asked the same question: ‘Do you inform your patients about SUDEP?’ 5-9% report informing all (Vegni et al., 2011; Friedman et al., 2012), with 7-35% informing none (Vegni et al., 2006; Friedman et al., 2012; Abdalla et al.’ 2013; Wasade et al., 2012). When the question has been asked of epilepsy specialist nurses, again very similar results are seen with 6% informing all and 7% informing none (Lewis et al., 2008). 


Results from The National Sentinel Clinical Audit of Epilepsy-Related Death (2002) demonstrated that, from review of secondary care records in a selected population, these self-reported figures of infrequent discussion were reflective of practice (Hanna et al., 2002). In order to examine this further in a general epilepsy population our group undertook an audit of local practice in 2011. All patients with a diagnosis of epilepsy who had attended an epilepsy specialist clinic appointment (inclusive of all physician and nurse led clinics) in Tayside, Scotland during January 2009 to June 2009 were included. A 5 year retrospective case note review was then undertaken. Three hundred and forty five case notes (94% case note ascertainment) were available for review. Results demonstrated that only 14 (4%) of patients had a documented discussion of SUDEP. Despite these low numbers, patients were significantly less likely to be told about SUDEP if they had drug resistant epilepsy; conversely those with ongoing seizures were significantly more likely to be informed (Waddell et al., 2013).   


Previous studies had suggested that lack of awareness or knowledge about SUDEP was a limiting factor in discussion (Lewis et al., 2008; Donner et al., 2012). In order to address this, audit results were then disseminated and discussed at local and national meetings. Coinciding with this was the publication of recommendations from a fatal accident inquiry (FAI) into two cases of SUDEP in Scotland (Duff, 2011). An FAI is a Scottish judicial process which investigates the circumstances of some deaths occurring in Scotland; whilst their conclusions are not legally binding this FAI did raise the profile of discussion of SUDEP and gave support to the disclosure of SUDEP with patients as per national guidelines in the UK (SIGN, 2005; NICE, 2012). To determine whether practice had improved following these events, a further 6 month retrospective case note review over the period of 1st January 2012 to 31st March 2012 was then undertaken. Two hundred and forty case notes were reviewed (76% case note ascertainment). Results demonstrated documented discussion of SUDEP in 34% of case notes. Similar to our initial audit, those with drug resistant epilepsy were significantly less likely to be informed, as were those with learning disabilities. Conversely, those with ongoing seizures were more likely to be informed. The most striking finding from this audit was that those with newly diagnosed epilepsy were 24 times more likely to be informed compared to those with longstanding, poorly controlled epilepsy (unpublished). New referrals, although a heterogenous risk group, have a lower incidence of SUDEP than those with long standing epilepsy (Hesdorffer et al., 2011). 


Auditing practice up until now has been important in order to clarify the extent of the low rate of SUDEP disclosure. It is clear from repeat audit that despite the raised profile of SUDEP, practice did not change in a clinically significant manner. It may therefore be that SUDEP is not being discussed with the majority due to perceived barriers to discussion rather than due to lack of awareness or knowledge. 


It is encouraging therefore to see the focus of research start to change with recent studies investigating the validity of perceived barriers to discussion. Previous studies reported concerns over negative reactions to discussing SUDEP, with reports of patients’ reactions ranging from anguish and anger (Vegni et al., 2011) to resentment and anxiety (Morton et al., 2006). A recent small study investigating this demonstrated that there were no sustained levels of anxiety reported by young adults after disclosure (Harden et al., 2014). Similarly, a study of parents of children with epilepsy reported no sustained change in carer behaviour towards children with epilepsy after disclosure of SUDEP risk (Gayatri et al., 2010). There are fewer objective studies examining the potential benefits to SUDEP disclosure, however there is suggestion that it can aid patient’s self-efficacy with 62% of epilepsy nurse specialists reporting that they believed medication compliance improved after discussing SUDEP, and 59% reporting perceived risk factor avoidance after discussion (Lewis et al., 2008). 


In summary, practice is starting to change, however those at the greatest risk of SUDEP remain significantly less likely to be informed. It would be hoped that with new evidence emerging that addresses concerns and barriers, and also potential benefits to SUDEP disclosure, that rates of discussion would start to improve.    



Briony Waddell

Neurology Research Registrar

Western General Hospital, Scotland, UK

Dec 2014



How to cite:

Waddell B. Communication – the validity of perceived barriers to discussion. In: Hanna J, Panelli R, Jeffs T, Chapman D, editors. Continuing the global conversation [online]. SUDEP Action, SUDEP Aware & Epilepsy Australia; 2014 [retrieved day/month/year]. Available from:































Abdalla IG, Scorza CA, Cavalheiro EA, de Albuquerque M. Attitudes of Brazilian epileptologists to discussion about SUDEP with their patients: truth may hurt, but does deceit hurt more? Epilepsy Behav 2013;27:470-71.

Donner EJ, Jeffs T, Jette N; Are Canadian paediatricians aware of SUDEP? (abstract); American Epilepsy Society Meeting 2012.

Duff AJM. Determination of Sheriff Alistair Duff, Sheriff of Tayside Central and Fife at Dundee. Inquiry held under Fatal Accidents and Sudden Deaths Inquiry (Scotland) Act 1976 into the deaths of Erin Casey and Christina Fiorre Ilia. 2011.

Duncan S, Tonberg A, Harden J, McLellan A, Chin R; SUDEP disclosure in young adults with epilepsy: patients’ reaction, perception of risk, views on timing and behavioural change (abstract); American Epilepsy Society Meeting 2013.

Friedman D, Donner EJ, Stephens D, Wright C, Devinsky O. Sudden unexpected death in epilepsy: knowledge and experience among US and Canadian neurologists. Epilepsy Behav 2014;35C:13-18.

Gayatri NA, Morrall MC, Jain V, Kashyape P, Pysden K, Ferrie C. Parental and physician beliefs regarding the provision and content of written sudden unexpected death in epilepsy (SUDEP) information. Epilepsia 2010;51:777–82.

Hanna NJ, Black M, Sander JW, Smithson WH, Appleton R, Brown S, et al. The national sentinel clinical audit of epilepsy-related death. London: The Stationary Office, 2002.

Harden J, Tonberg A, Chin RF, McLellan A, Duncan S. If you're gonna die, you're gonna die: young adults' perceptions of sudden unexpected death in epilepsy. Chronic Illness 2014. Published online before print October 31, 2014.

Hesdorffer DC, Tomson T, Benn E, Sander JW, Nilsson L, Langan Y, et al. Combined analysis of risk factors for SUDEP. Epilepsia 2011;52(6):1150-59.

Lewis S, Higgin S, Goodwin M. Informing patients about sudden unexpected death in epilepsy: a survey of specialist nurses. Brit J Neuro Nursing 2008;4:30-34.

Morton B, Richardson A, Duncan S. Sudden unexpected death in epilepsy (SUDEP): don’t ask, don’t tell? J Neurol Neurosurg Psychiatry 2006;77:199-202.

NICE CG137 [National Institute for Health and Care Excellence (NICE) National Clinical Guideline (CG) 137]. Epilepsies: diagnosis and management. CG137. London: NICE; 2012.

SIGN #81 [Scottish Intercollegiate Guidelines Network].  Diagnosis and management of epilepsies in children and young people: a national clinical guideline. Scotland: SIGN; 2005. ISBN 1 899893 24 5.

Vegni E, Leone D, Canevini M P, Tinuper P, Aldo Moja E: Sudden unexpected death in epilepsy (SUDEP): a pilot study on truth telling among Italian epileptologists. Neurol Sci 2011;32(2):331-35.

Waddell B, McColl K, Turner C, Norman A, Coker A, White K. Are we discussing SUDEP? – a retrospective case note analysis. Seizure Eur J Epilep 2013;22(1):74-76.

Wasade VS, Spanaki M, Iyengar R, Barkley G L, Schultz L. AAN epilepsy quality measures in clinical practice: a survey of neurologists. Epilepsy Behav 2012;24: 468-73.

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continuing the global conversation

Sudden Unexpected Death in Epilepsy
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