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Goodkin and Donner

Dr. Howard Goodkin and Dr. Elizabeth Donner talk about:

  •   Who is discussing SUDEP and why
  •   If you need to discuss SUDEP
  •   How to best address SUDEP

Sudden Unexpected Death in Epilepsy (SUDEP) refers to the sudden and unexpected nontraumatic or nondrowning death of a person with epilepsy when no cause of death is found (Nashef, 2012). Most often the death follows a seizure; however this is not required.

SUDEP is the most common cause of epilepsy-related death (Tomson et al, 2004) and occurs at all ages (Donner et al, 2001) with an annual incidence of about1 case in 1,000 persons with epilepsy per year (Thurman et al, 2014). The highest incidence (6.3 to 9.3 in 1,000 person-years) occurs in those with drug-resistant epilepsy such as epilepsy-surgery candidates (Tomson et al, 2004).

Who is Discussing SUDEP?

The Institute of Medicine Report Epilepsy Across the Spectrum: Promoting Health and Understanding (2012) confirmed the joint position of the American Epilepsy Society and Epilepsy Foundation (So et al, 2009) that those with epilepsy, their families, and caregivers should be made aware of SUDEP. Despite this recommendation, those who care for people with epilepsy differ in their approach to the discussion of SUDEP (Brodie & Holmes, 2008).

Only a minority of neurologists and epileptologists discuss SUDEP with all their patients; many reserve SUDEP education for those whom they consider to be at high risk (e.g., uncontrolled, generalized tonic-clonic seizures), those who refuse treatment, or when the patient, family, or caregiver asks (Friedman et al, 2014; Waddell et al, 2013; Gayatri et al, 2010; Morton et al, 2006).

Reasons that have been cited for not discussing SUDEP include the absence of modifiable risk factors or proven prevention and concern that the discussion will increase anxiety or worsen quality of life (Friedman et al, 2014; Beran et al, 2004).

Why Discuss SUDEP?

Although limited data of parents of children with epilepsy confirms that learning of SUDEP can lead to or exacerbate anxiety, the majority of these same parents desired SUDEP education (RamachandranNair et al, 2013; Gayatri et al, 2010).

  • Information regarding SUDEP is readily available via the Internet.
  • Failure to engage in discussion does not assure that your patient, their family, or caregivers are naïve to the subject.
  • Furthermore, when patients and families learn critical facts about their disorder from sources other than their health care provider, they may lose trust in the “doctor-patient” relationship.
  • Failure to engage may be a lost opportunity to place the information that they have gleaned from other sources into context for that individual patient.
  • Failure to discuss SUDEP leaves room for misinformation that potentially worsens anxiety.

Before approaching the topic of SUDEP, each physician needs to assure appropriate knowledge. A recent survey of neurologists (Friedman et al, 2014) found that a great majority (82.8%) of the 1,645 neurologists who responded to the survey were lacking in their understanding of SUDEP risk factors.

Do I need to discuss SUDEP with all of my patients?

All people with epilepsy have the right to know the risks of their condition. Information about SUDEP should be delivered as part of comprehensive education about epilepsy. In many cases, this will include informing the person with epilepsy that their risk of SUDEP is relatively low and for others it will include ways they can reduce their risk.

It is recognized that for certain groups, this discussion may be inappropriate based on their age, cultural beliefs, or comorbid psychiatric conditions (Hirsch et al, 2011). For children, it is recommended that this topic first be discussed with their parents.

When is the best time to discuss SUDEP with my patients?

While the literature is limited with regards to when people with epilepsy and their families want to learn about SUDEP, there are many opportunities to broach the subject in the course of caring for a person with epilepsy.

  • At epilepsy diagnosis
  • When patients and families ask
  • Times of seizure freedom and/or AED discontinuation
  • Times of poor adherence
  • At lifestyle changes, changes in living situation
  • Diagnosis of drug-resistant epilepsy
  • Time of surgical referral

Parents of children with epilepsy report wanting to learn about SUDEP at the time of epilepsy diagnosis (RamachandranNair et al, 2013; Gayatri et al, 2010). Also, many families worry or ask about the risk of death due to seizures, providing an opportunity to discuss SUDEP.

The discussion of SUDEP should be considered when making treatment changes, including referrals for surgical evaluation and at times of poor adherence to encourage optimal epilepsy self-management. Once discussed, appropriate time needs to be provided for questions at that visit and future visits. Following up the conversation with written materials or the link to a recommended website may also be helpful.

What should I tell my patients about SUDEP prevention?

The best way to prevent SUDEP is to reduce the frequency of generalized tonic-clonic seizures. As such, the discussion of SUDEP prevention begins with a discussion of medication compliance and avoiding seizure risk factors. A limited literature search suggests that nocturnal supervision may reduce risk (Langan et al, 2005); however, it is important that the risk-benefits of supervision be considered. Furthermore, SUDEP may occur despite supervision (Ryvlin et al, 2013).

This content was created through a partnership between the Epilepsy Foundation and American Epilepsy Society.

Authored By: 
Howard P. Goodkin, MD, PhD
Elizabeth J. Donner MD, FRCPC
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Authored Date: 
09/2014