Raising Discussion on Gaps in SUDEP Knowledge in Epilepsy Care: Jude Luker, BA (Hons)


The head of Patient Engagement, Epilepsy and Rare Syndromes (Europe) at UCB Pharma discussed findings from a literature review presented at AES 2023 involving conversations about sudden unexpected death in epilepsy. [WATCH TIME: 4 minutes]

WATCH TIME: 4 minutes

"Why are physicians reluctant to have this conversation? There are several reasons including lack of time to deal with the perceived emotional reaction of the patient or the caregiver's anxiety about the impact of quality of life with this new risk they didn't know about. Sometimes there's a belief that prevention won't work, sometimes there's an assessment that the patient is at low risk of SUDEP. All these things are influencing the physician's decision.”

Global clinical guidelines recommend that patients with epilepsy should be counseled on sudden unexpected death in epilepsy (SUDEP); however, standardized guidelines have not been fully adopted. In a recent systematic review, findings showed a gap between what patients with epilepsy and caregivers want regarding information about SUDEP and the information shared by neurologists. These findings suggested that supporting and training neurologists to become adept at initiating difficult discussions with patients with epilepsy and caregivers may help to build a trusting partnership that enhances epilepsy management and in turn, reduces the risks for SUDEP.1

Lead author Jude Luker, BA (Hons), head of Patient Engagement, Epilepsy and Rare Syndromes (Europe) at UCB Pharma, and colleagues, reviewed studies between January 1, 2013, and April 5, 2023, using PubMed and searched for terms including “SUDEP” and “counselling or education or caregiver or clinician”. Of 172 studies identified, 60 were about SUDEP conversations. Presented at the 2023 American Epilepsy Society Annual Meeting, held December 1-5, in Orlando, Florida, all studies that reported caregivers’ needs and experiences of SUDEP (n = 32) indicated that most patients with epilepsy and caregivers wanted to be informed by their treating neurologist about SUDEP irrespective of their emotional reaction.2

Following the meeting, Luker recently sat down with NeurologyLive® to have a conversation about the findings from the presented study. She talked about the reason as to why over 90% of healthcare professionals discuss SUDEP risks with patients less than 12% of the time, according to the literature review. Luker also spoke about how the lack of information on SUDEP risks contributes to heightened trauma and guilt among bereaved caregivers, as revealed in the study. Additionally, she shared the subconscious barriers that might be hindering healthcare professionals from engaging in difficult conversations about SUDEP, as hypothesized in the research.

Click here for more coverage of AES 2023.

1. 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.
2. 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 17, 2024. https://www.ucb-usa.com/stories-media/UCB-U-S-News/detail/article/ucb-presents-new-data-about-real-world-experience-of-fintepla-fenfluramine-and-rare-epilepsy-syndromes-at-2023-american-epilepsy-society-annual-meeting
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