Changes Prior to SUDEP: What Caretakers Noticed
Abstract number :
3.227
Submission category :
4. Clinical Epilepsy / 4D. Prognosis
Year :
2021
Submission ID :
1826527
Source :
www.aesnet.org
Presentation date :
12/6/2021 12:00:00 PM
Published date :
Nov 22, 2021, 06:55 AM
Authors :
Kristina Simeone, PhD - Creighton University School of Medicine; Dawn Martenz - Charlie Foundation; Shruthi Iyer, MS - Research Scientist, Pharmacology and Neuroscience, Creighton University School of Medicine; Shelby Herr - Medical Student, Pharmacology and Neuroscience, Creighton University School of Medicine; Cameron Booth - Medical Student, Pharmacology and Neuroscience, Creighton University School of Medicine; Laura Heinemann, PhD - Associate Professor, Cultural and Social Sciences, Creighton University; Pierce Greenberg, PhD - Assistant Professor, Cultural and Social Sciences, Creighton University; Samantha Draves - Graduate Student, Pharmacology and Neuroscience, Creighton University School of Medicine; Stephanie Matthews - Research Scientist, Pharmacology and Neuroscience, Creighton University School of Medicine; Timothy Simeone, PhD - Associate Professor, Pharmacology and Neuroscience, Creighton University School of Medicine
Rationale: The lifetime incidence of epilepsy is 1:26 and approximately 30% of people with epilepsy are refractory to current anti-seizure drugs. Sudden unexpected death in epilepsy (SUDEP) occurs in at least 1:1000 people with epilepsy each year. While we do know that risk increases to ~1:150 per year for individuals with severe refractory generalized tonic clonic (GTC) seizures and a few genetic mutations are associated with increased risk, it is unclear whether someone can transition from low risk to high risk-based changes in non-seizure physiology. It is unclear whether biomarkers can identify temporal changes in risk (i.e. whether someone at risk for SUDEP will die tomorrow, in 2 months, next year or never). This is a difficult study to conduct clinically due to insufficient power. Preclinical studies indicate that increased sleep deficiency, intermittent bradycardia, apnea, and chronic intermittent hypoxia precede SUDEP by two weeks, irrespective of age. In the current study, we surveyed the caretakers of SUDEP victims to identify whether they noticed changes prior to SUDEP.
Methods: The electronic survey was created in Qualtrics and queried about behavior, energy levels, cognition, sleep, respiration, heart rate, or seizures prior to SUDEP. If the respondent answered yes to noticing a change in one of these endpoints, then eight follow-up questions were posed. Demographic information was collected at the end of the survey. The construction of the survey used intentional wording to minimize coverage, response, and measurement errors. The survey was distributed with the assistance of The SUDEP Institute, PAME, CURE Epilepsy, the DannyDid Foundation, and NASR.
Results: We have received 201 respondents thus far. Briefly, approximately half of respondents had sleep trouble weeks to months prior to SUDEP. Others reported changes in their behavior (more depressed), problems with cognition (difficulty thinking, reading, speaking, understanding sentences or questions, learning new things or remembering), energy levels and breathing (increased apnea, having problems catching their breath during periods of low activity). Data will be presented in a table.
Conclusions: Data generated from this survey may provide us with insight for future research directions to identify novel biomarkers of impending SUDEP and potential timeframes for intervention. This study was inspired by the caretakers of SUDEP victims at the Partners Against Mortality in Epilepsy (PAME) Conference in 2018.
Funding: Please list any funding that was received in support of this abstract.: NIH NINDS NS111389.
Clinical Epilepsy