Clinical implications of SUDEP
[Part 3: Challenges; Johnston A & Smith P]
The overall risk of sudden unexpected death in epilepsy (SUDEP) is one in 1000 persons with epilepsy annually (Devinsky, 2011) but this probably increases with age by 10% per decade (Dasheiff, 1991; Sillanpaa & Shinnar, 2010). Despite improved awareness, it remains under-recognised and under-reported and a major public health concern (Thurman et al., 2014). The major clinical risk factors are well known: frequent and refractory generalized tonic–clonic seizures, and particularly those arising in sleep (Dasheiff, 1991; Sillanpaa & Shinnar, 2010). Every SUDEP case justifies an in-depth clinical review, including a questioning and reflection on personal and departmental clinical practice. Each case requires a review of the medical notes and a checking of accuracy of diagnosis, the appropriateness of investigations and treatment, and review of the discussions and provision of information. A SUDEP case should prompt clinicians to question themselves, their services, their clinical management, and the extent to which the patient was or was not empowered to be an equal partner in their care.
A particular area where better appreciation of SUDEP has influenced clinical practice is doctors’ and patients’ attitude towards sleep-related seizures. Only twenty years ago, the received clinical wisdom was that sleep-related seizures carried a low risk of injury (since the patient was safe from falling) and so these did not justify aggressive (or even any) antiepileptic medication. The realisation now that sleep-related convulsions present a particular danger of SUDEP has shifted management much more towards a ‘zero tolerance’ attitude towards such seizures and more aggressive management.
Alongside the growing understanding of SUDEP a much greater focus on patient empowerment and shared decision-making has developed. Patients who understand the very real risks of seizures are better placed to make lifestyle decisions that will help them to stay safe. Despite the difficulty of discussing potential SUDEP, an approach to epilepsy care that facilitates such discussions empowers patients, improves decision making, aids best information transfer, improves medication concordance, reduces patient concerns and improves overall quality of care. For UK clinicians, the inclusion of discussions on SUDEP within national guidelines (NICE, 2012) proved an important advance; such discussions form the foundation upon which to build other aspects of epilepsy care.
A general epilepsy clinic typically includes the full spectrum of patients with epilepsy – those awaiting diagnosis or newly diagnosed, those with refractory epilepsy who may be surgical candidates, those who are seizure free and wish to withdraw medication, those with learning disability and those (probably everybody) who would welcome knowledgeable discussions about their medication and lifestyle issues. A common theme is that seizures carry a risk of harm: what is the risk and to what extent can it be reduced? In well-functioning consultations, SUDEP discussions arise naturally; managing this discussion in a non-alarming and sensitive manner helps to build further conversations on seizures and on safety. An excellent and practical resource provides advice on this important area (Leach, 2012).
It is sensible to discuss SUDEP early in a patient journey (Kroneret al., 2014; RamachandranNair, 2013; Stevenson & Stanton, 2014) but also to revisit this topic with established follow-up patients, even those attending the service for years. A dialogue of practical safety measures can help to introduce the more difficult topic of SUDEP. Patients, families and carers are often well aware of the physical harms that may result from a seizure, such as a lateral tongue bite, shoulder dislocation and long bone fractures; many already know that rarely people may die in a seizure and welcome a more open discussion. An epilepsy consultation should also be an opportunity to address factors that may help to limit the likelihood of seizure-related harm, including general safety, improving medication concordance, limiting sleep deprivation and moderating alcohol consumption.
Recent epidemiological studies suggest that the public health burden of SUDEP has been underappreciated. This implies that it is not just clinicians who need to talk more about SUDEP, but also health policy makers, researchers and the public health community (Thurman et al., 2014). The benefits of SUDEP discussions in patient-centred epilepsy consultations are clear. Knowledge that is accurate and delivered in a sensitive, timely and non-alarming manner can empower patients (Stevenson & Stanton, 2014); it can promote open discussions, improve doctor–patient relationships and ultimately aid self-management.
Ann Johnston, Consultant Neurologist, Royal Gwent Hospital, Newport, Wales, UK
Phil Smith, Professor of Neurology, Department of Neurology, The Epilepsy Unit, University Hospital of Wales, Cardiff, UK
How to cite:
Johnston A & Smith P. Clinical implications of SUDEP. 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: www.sudepglobalconversation.com.
Dasheiff RM. Sudden unexpected death in epilepsy: a series from an epilepsy surgery program and speculation on the relationship to sudden cardiac death. J Clin Neurophysiology: official publication of the American Electroencephalographic Society 1991;8(2):216-22.
Devinsky O. Sudden, unexpected death in epilepsy. N Engl J Med 2011;365(19):1801-11.
Kroner BL, Wright C, Friedman D, Macher K, Preiss L, Misajon J, et al. Characteristics of epilepsy patients and caregivers who either have or have not heard of SUDEP. Epilepsia 2014;55(10):1486-94.
Leach JP. SUDEP discussions with patients and families. Pract Neurol 2012;12(2):103-6.
NICE CG137 [National Institute for Health and Care Excellence (NICE) National Clinical Guideline (CG) 137]. Epilepsies: diagnosis and management. CG137. London: NICE; 2012.
RamachandranNair R. What families want to know. Epilepsy Curr 2013;13(2):16.
Sillanpaa M, Shinnar S. Long-term mortality in childhood-onset epilepsy. N Engl J Med 2010;363(26):2522-29.
Stevenson MJ, Stanton TF. Knowing the risk of SUDEP: two family's perspectives and The Danny Did Foundation. Epilepsia 2014;55(10):1495-500.
Thurman DJ, Hesdorffer DC, French JA. Sudden unexpected death in epilepsy: assessing the public health burden. Epilepsia 2014;55:1479-85.
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