In focus at IEC: SUDEP

In focus: SUDEP

The sudden unexpected death in epilepsy was discussed in various sessions. On Monday 1^st of September the topic of SUDEP was discussed from different points of view by different stakeholders from advocacy to science.

Gardiner Lapham (USA) started the session by talking about the importance of involving families as partners in SUDEP prevention. Research shows families consistently prefer early and clear disclosure, yet most remain uninformed despite existing guidelines. She emphasized that risk discussions should rely on evidence-based tools and be framed with compassion and hope. Should the worst happen, support to families should always be available.

Discussing SUDEP openly offers an opportunity to build trust and promote preventive measures, such as supervision, seizure detection devices, adherence to medication, emergency management, and potential surgical options.

Roland Thijs (NED) argued for getting a common understanding for the way SUDEP is discussed. There is a need to reassess SUDEP by integrating epidemiological data, risk factors, and mechanistic insights, with the aim of moving towards a unified framework for classification and risk prediction.

SUDEP should be considered as a spectrum with multiple contributing mechanisms rather than a single pathway.

To aim for better understanding different solutions should be used, like deep phenotyping combining clinical, genetic, and imaging markers, wearable devices to capture information like long-term EEG and better recordings of terminal events and autopsy reports.

Shobi Sivathaboo (AUS) has a deep interest in mechanisms of SUDEP. She started with short summary of Mortemus study that evaluated cardiorespiratory arrests encountered in epilepsy monitoring units worldwide, and Oregon registry that showed that 34% of patients with epilepsy and witnessed cardiac arrest did not have history of preceding seizures.

While SUDEP and SCD (Sudden Cardiac Death) share some features, more study is needed to better understand the mechanisms, genetic contributions, and clinical overlap to improve risk stratification and prevention.

Obstructive sleep apnea may be currently overlooked in SUDEP investigations. Due to heterogeneous nature of SUDEP, she suggested that epidemiological data and improved use of data given by wearables should be used to improve our understanding of cardiac causes.

Pasquale Striano (IT) talked about how pharmacological strategies, adherence to therapy, and targeted interventions contribute to reducing SUDEP risk.
Reducing generalized tonic-clonic seizures remains a cornerstone, while documented non-adherence increases risk for SUDEP.

Seizure suppression is the central element in reducing SUDEP, with adherence representing a key driver of risk modification.

No antiseizure drug has shown universal harmful effects; neutral or protective signals appear when analyses are adjusted for seizure control.
There may be potential to modify SUDEP outcomes in the future with development of precision-medicine strategies.

SUDEP: To inform or not and when to do it?

The end of session witnessed lively discussion about the the need to inform about SUDEP and when it should be done. Currently providing SUDEP information during initial visits is in many places uncommon, but many agree it should be improved. The challenge lies in balancing essential information with avoiding unnecessary fear or burden. Key topics include risk mitigation strategies, such as night-time safety measures.

Studies show people affected by SUDEP often wish they had received this information sooner. Counseling, when tailored to individual risks, is generally well-received and positive updates during follow-ups, such as improved treatment outcomes reducing risks, can help balance these discussions. Life transitions, like moving out of the family home, also provide important opportunities to revisit and adapt safety messaging. Clear, timely communication empowers patients while minimizing stress.

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In focus: SUDEP