Evaluating current practices and communication surrounding Sudden Unexpected Death in Epilepsy (SUDEP): A survey analysis
Abstract number :
2.107
Submission category :
15. Practice Resources
Year :
2025
Submission ID :
616
Source :
www.aesnet.org
Presentation date :
12/7/2025 12:00:00 AM
Published date :
Authors :
Presenting Author: Katherine Nickels, MD – Mayo Clinic, Rochester MN, USA.
Carly Katterman, PharmD – Biocodex
Kelly Gwin, PharmD – Biocodex
Andrea Calvert, PharmD, BCPPS – Biocodex
Carla Schad, MD – Biocodex
Rationale: SUDEP is a rare, poorly understood, catastrophic risk of epilepsy. SUDEP risk is higher in some epilepsy syndromes, such as Dravet syndrome (DS). Patients with DS have a 15-fold higher risk of SUDEP compared to other types of childhood-onset epilepsy, accounting for nearly half of all deaths in DS1. Health care providers (HCPs) play a vital role in counseling patients/caregivers about SUDEP and implementing proactive management to reduce risk. Despite this, SUDEP remains a sensitive and inconsistently addressed topic in clinical care. To understand awareness, training, counseling, and practice approaches related to SUDEP, a survey of HCPs was conducted.
Methods: A voluntary 15-question survey with 2 adjunctive prompts, based on prior responses, was conducted in-person by a medical communications agency, MCI Group, at the 2024 American Epilepsy Society (AES) Conference in December 2024, in Los Angeles, CA. The survey targeted US and international HCPs treating patients with epilepsy and aimed to evaluate SUDEP awareness, clinical training, counseling patterns, application of the current SUDEP guidelines, and preferred formats for education.
Results: The survey resulted in 114 respondents, predominantly adult or pediatric epileptologists affiliated with US Level 4 National Association of Epilepsy Centers (Table 1). About 70% of HCPs who participated currently treat DS patients, with 93% of HCPs aware of the increased risk of SUDEP. However, almost half of the respondents did not receive formal SUDEP training in residency or fellowship, and about a quarter were not aware of the current 2017 SUDEP practice guidelines (AAN/AES) (Table 2). Over 40% of respondents reported they avoid counseling epilepsy patients on SUDEP risk, and about a third do not counsel on SUDEP risk until the 2nd visit or further in the treatment journey. Uncontrolled seizures and generalized tonic-clonic seizures (GTCS) ( >3/year) were identified as primary risk factors for SUDEP, with most HCPs prioritizing seizure freedom and treatment of GTCS to mitigate SUDEP risk. Almost 50% of the respondents believe counseling patients/caregivers around SUDEP risks “needs improvement,” and over 40% do not use available resources for patient/caregiver education. Most HCPs noted that medical symposia, online modules, and in-office or hospital education are preferred formats for SUDEP education.
Conclusions: Despite broad awareness of SUDEP, this survey reveals significant gaps in formal training, counseling standardization, guideline application, and use of educational resources. Although discussing SUDEP with patients/caregivers can be difficult, early and on-going conversations regarding this risk cannot be dismissed. Given SUDEP accounts for nearly 50% of all deaths in patients with DS, it is critical for HCPs to provide proactive and transparent counseling along with appropriate medication utilization to help mitigate the risk of SUDEP.
Funding: Biocodex, Inc.
Practice Resources