Don’t Ask Don’t Tell or Full Disclosure? Discussing SUDEP with Patients and Families in the Global Community

Course Description: In spite of uniform parental desire for information, consistent SUDEP counseling is not happening in our pediatric neurology practices globally. This session highlights the important cultural barriers that prevent child neurologists from discussing SUDEP by providing information on the incidence and frequency of mortality in pediatric epilepsy patients, as well as our current understanding of the phathophysiology of SUDEP. This will be followed by a panel of experts throughout the globe who will describe the unique cultural beliefs that affect discussing SUDEP and mortality in his/her region.

Learning Objectives

1. Gain a better understanding of the frequency and potential pathophysiology of SUDEP in pediatric epilepsy patients.
2. Recognize differences in cultural practices regarding discussing SUDEP and mortality in pediatric epilepsy patients.

Impact Statements

1. Understanding the parental desire for SUDEP and epilepsy mortality counseling.
2. Identifying potential cultural barriers that prevent the participant from discussing SUDEP and epilepsy-related mortality in his/her practice.

Organizer: Katherine Nickels, MD, FAES, FAAN; Mayo Clinic College of Medicine, Rochester, Minnesota, USA

How Common is the Nightmare? Global Frequency and Causes of Mortality in Pediatric Epilepsy
Elizabeth Donner, MD, MSc, FRCPC; The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada

What is our Current Understanding of SUDEP in Pediatrics
Omar Abdel-Mannan, MRCPCH, MA; Great Ormond Street Hospital for Children, London, UK 

Panel Discussion

• Jeffrey Buchhalter, MD, PhD; University of Calgary, Calgary, Alberta, Canada
• J Helen Cross MB, ChB, PhD, OBE FRCP, FRCPCH; UCL Great Ormond Street Institute of Child Health, London UK
• Manjari Tripathi
• Viviana Venegas, MD; Advanced Center of Epilepsy, Clinica Alemana de Santiago, Institute of Neurosurgery, Santiago, Chile