What is Sudden Unexpected Death in Epilepsy (SUDEP)?

From the Guidelines

The best way to prevent Sudden Unexplained Death in Epilepsy (SUDEP) is to maximize seizure control. This approach is supported by the 2015 ESC guidelines for the management of patients with ventricular arrhythmias and the prevention of sudden cardiac death, which notes that frequent seizures, especially generalized tonic-clonic seizures, are the greatest risk factor for SUDEP 1. Key strategies for maximizing seizure control include:

• Optimal medication adherence with antiepileptic drugs
• Lifestyle modifications such as regular sleep patterns, stress reduction, and avoiding seizure triggers
• Consideration of nighttime supervision or monitoring devices for those at higher risk It is also important for patients with epilepsy to undergo ECG screening to rule out diseases that mimic epilepsy, as epilepsy may be due to neurological channelopathy, potentially interacting with ion channel abnormalities in the heart and the brain 1. By prioritizing seizure control and addressing individual risk factors, patients with epilepsy can reduce their risk of SUDEP.

From the Research

Definition and Incidence of SUDEP

• Sudden Unexpected Death in Epilepsy (SUDEP) is defined as sudden, unexpected, witnessed or unwitnessed, non-traumatic or non-drowning death of people with epilepsy, with or without evidence of a seizure, excluding documented status epilepticus and in whom postmortem examination does not reveal a structural or toxicological cause for death 2, 3.
• SUDEP has a reported incidence of 1 to 2 per 1000 patient-years and represents the most common epilepsy-related cause of death 2, 3, 4.

Predictors of Risk of SUDEP

• The presence and frequency of generalized tonic-clonic seizures (GTCS), male sex, early age of seizure onset, duration of epilepsy, and polytherapy are all predictors of risk of SUDEP 2, 3, 4.
• Focal to bilateral and generalized tonic-clonic seizures (TCS), nocturnal seizures, and lack of nocturnal supervision increase the risk of SUDEP 5.

Preventative Strategies for SUDEP

• Reducing the occurrence of GTCS by timely referral for presurgical evaluation in people with lesional epilepsy and advice on lifestyle measures 2, 3.
• Detecting cardiorespiratory distress through clinical observation and seizure, respiratory, and heart rate monitoring devices 2, 3.
• Preventing airway obstruction through nocturnal supervision and safety pillows 2, 3, 5.
• Reducing central hypoventilation through physical stimulation and enhancing serotonergic mechanisms of respiratory regulation using selective serotonin reuptake inhibitors (SSRIs) 2, 3.
• Wearables can detect TCS and alert caregivers, potentially preventing SUDEP 5.

Effectiveness of Interventions in Preventing SUDEP

• There is very low-quality evidence of a preventative effect for nocturnal supervision against SUDEP 2, 3.
• Limited, very low-certainty evidence suggests that supervision at night reduces the incidence of SUDEP 3.
• Further research is required to identify the effectiveness of other current interventions, such as seizure detection devices, safety pillows, SSRIs, early surgical evaluation, educational programmes, and opiate and adenosine antagonists, in preventing SUDEP in people with epilepsy 2, 3.

Counseling and Patient Education

• Documentation of SUDEP counseling is rare, and varies by clinician, hospital, and patient factors 6.
• Most patients and relatives desire information about SUDEP, and counseling has a favorable impact on treatment adherence and behavior, with no negative effects on mood and quality of life 6, 5.
• Recommendations include informing all epilepsy patients and their relatives about SUDEP and risk factors, and providing measures to counteract the elevated risk and imminent SUDEP 5.