The Urgent Need for Improved Physician-Patient Conversations on SUDEP: Jude Luker, BA (Hons)


The head of Patient Engagement, Epilepsy and Rare Syndromes (Europe) at UCB Pharma discussed the inconsistencies in educational information given to patients with epilepsy, including the knowns of sudden unexpected death. [WATCH TIME: 4 minutes]

WATCH TIME: 4 minutes

"The literature review is telling us that there's still a gap, it's still an issue. We would like next to find ways to bring this perspective of the patient and the caregiver much more directly to the forefront when it comes to conversations with the physician.”

Sudden unexpected death in epilepsy (SUDEP) is devastating event where a patient with epilepsy experiences death because of a seizure that is confirmed in a postmortem examination. The pathophysiological mechanisms of this event are not fully known because of limited data, lack of witness, and has only been electrophysiologically monitored in a few cases with simultaneous assessment of respiratory, cardiac, and brain activity.1 Despite the risks that SUDEP possess on patients, research shows that there is a lack of knowledge that exists among this patient population, which can make prevention more difficult.

Presented at the 2023 American Epilepsy Society Annual Meeting, held December 1-5, in Orlando, Florida, a literature review showed a gap between what patients with epilepsy and caregivers want regarding information about SUDEP and the information shared by clinicians. Conducted by lead author Jude Luker, BA (Hons), head of Patient Engagement, Epilepsy and Rare Syndromes (Europe) at UCB Pharma, and colleagues, the findings suggest clinicians need to become more adept at initiating difficult discussions with their patients and caregivers to enhance epilepsy management and in turn, reduce risk for SUDEP.2,3

Following the meeting, Luker sat down with NeurologyLive® to further discuss the findings from the presented study. She talked about how improved physician training can address the confirmed gap between patient needs and the information provided in epilepsy management. She also shared some of the insights gained from a pilot meeting in December, and how they contribute to understanding the reluctance when initiating difficult conversations about epilepsy care. In addition, Luker spoke about how a proposed training program aims to incorporate direct feedback from patients to ensure physicians better understand and respond to the emotional complexities of epilepsy care discussions.

Click here for more coverage of AES 2023.

1. Giussani G, Falcicchio G, La Neve A, et al. Sudden unexpected death in epilepsy: A critical view of the literature. Epilepsia Open. 2023;8(3):728-757. doi:10.1002/epi4.12722
2. Luker J, Ryvlin P, Stanton T, Shaw S, Mearns K. Bridging the Gap Between Neurologists and People with Epilepsy/Caregivers: Systematic Literature Review About SUDEP Conversations. Presented at: 2023 AES annual meeting; December 1-5; Orlando, FL. Abstract 2.376.
3. UCB presents new data about the real-world experience of FINTEPLA® (fenfluramine) and rare epilepsy syndromes at 2023 American Epilepsy Society (AES) Annual Meeting. News Release. Published December 2, 2023. Accessed January 23, 2024.
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