Preventing Epilepsy Deaths: Clinician Toolkit

Epilepsy Deaths: The Facts

The overall risk of dying is up to 3 times higher in people with epilepsy than in the general population (IOM Report, 2013). The risk of death among children with epilepsy may be a bit higher since most children without epilepsy have very low risks.

Providing patients with information about the risks associated with their condition can help them make informed decisions about their treatment and care. Discussion of lifestyle behaviors, such as medication adherence, and substance abuse, as well as how to monitor seizures, particularly at night, and awareness of outcomes such as Sudden Unexpected Death in Epilepsy (SUDEP) might reduce morbidity and mortality from epilepsy (Smart, 2020)

Many people with epilepsy may have concerns about the risk of death from their condition, and discussing this with a neurologist can help alleviate these worries. The 2017 AAN/AES Sudden Unexpected Death in Epilepsy Practice Guidelines recommend disclosing the risk of SUDEP a recent study found that providing SUDEP information has no adverse effects on overall health, health-related quality of life, depressive symptoms, stigma, or seizure worry among people with epilepsy (PWE), who appreciate receiving this information. (Waddle 2022) This study also reported discussing the risk of SUDEP improved compliance among people with epilepsy; 25% reported enacting strong or very strong behavioral adjustments at 3-month follow-up, including 12.5% who reported increased adherence to anti-seizure medication or the introduction of new anti-seizure medication.

While improving seizure control may be the most critical measure to reduce epilepsy-related mortality in general, and SUDEP in particular, it is important for clinicians and PWE to understand all the risk factors associated with increased mortality risk and what can be done to decrease the risk. This allows for the treatment and care of people with epilepsy to be specific to their individual and unique needs.

Discussing the risk of death from epilepsy with patients may seem difficult. Still, it’s an integral part of providing comprehensive and appropriate care for PWE and this toolkit can be used to manage and guide conversations.

What are the risk factors?

In 2022, CNF convened a group to determine how to improve awareness about the risk of epilepsy deaths and how to improve conversations with the goal of saving lives.  This group of epilepsy experts from the US, Canada, and the UK collaboratively created this toolkit which 18 epilepsy organizations have endorsed.  The group established four main risk categories based on scientific research.

Seizures and syndromes associated with increased risk of mortality
  • High-risk seizures
    • Generalized tonic–clonic seizures are associated with the highest risk of mortality, but the level of increased mortality is affected by several factors. (Forsgren, 2005)
  • Accidents related to seizures
    • The odds of injury were eight times higher in inadequately treated patients compared to adequately treated patients or controls. (Elavarasi, 2020)
  • Unsupervised seizures
    • People who die from SUDEP live alone, die unwitnessed at home at night, with an indication of a preceding seizure, supporting the critical role of lack of supervision. (Sveinsson, 2018)
Health Services
  • High-risk medical comorbidities
    • Among all SUDEP cases with available descriptive postmortem pulmonary examination, 72% had pulmonary changes, and 25% had cardiac abnormalities. (Nascimento, 2017)
    • The use of antiepileptic drugs in the presence of hepatic or renal disease is complex and requires great familiarity with the pharmacokinetics of these agents. Closer follow-up of the patients and more frequent monitoring of serum concentrations are required to optimize clinical outcomes. (Asconape, 2014)
    • Epilepsy was associated with increased mortality in people with intellectual disabilities in most studies, particularly in those experiencing recent seizures. (Robertson, 2015)
  • Mental health
    • The presence of comorbid psychiatric disorders in adults with epilepsy is associated with increased mortality (Tao, 2021)
Social Determinants