Abstracts

Rationale: Sudden Unexplained Death in Epilepsy (SUDEP) is a rare but significant cause of mortality in epilepsy that was previously not well known to the public. However, in recent years, the movement around SUDEP prevention and public awareness has gained momentum. A recent change in New York State law now mandates the education of SUDEP by providers to patients. Previous analyses have shown poor readability and content inclusion of patient education materials (PEMs) within epilepsy and other neurologic diseases. To our knowledge, this is the first PEM analysis regarding SUDEP. There is still much to explore regarding health literacy and accessibility in the United States. The goal of this study is to evaluate the inclusion rates of key health literacy topics related to SUDEP among online PEMs.

Methods: The top 100 search results from a Google and Bing search were extracted using the terms "SUDEP" and "Sudden Unexpected Death in Epilepsy," of which 52 websites met the inclusion criteria. Website organizations were categorized as community, academic, or industry. We also distinguished content as it was related to a population (adult, pediatrics, or both adult/pediatrics). Content was then reviewed for inclusion of key topics regarding epilepsy and SUDEP – including definition, risk factors, treatment, risk reduction, impact, and resources. Analysis was done with the Fischer’s exact test.

Results: Most PEMS across organization type included information about the definition of SUDEP (87%), yearly adult incidence (75%), yearly incidence for adults & children (52%), risk factors (92%), potential causes (77%), strategies for risk reduction (88%), and resources for patients (88%). Fewer sources included the same topics related to epilepsy in general. An analysis of topic inclusion between academic and community organizations showed that academic organizations included epilepsy diagnosis methods at higher rates (p< 0.02), but community organizations more frequently addressed SUDEP yearly incidence for both adults and children (p< 0.02), and strategies for seizure risk reduction (p< 0.05). Among academic, community, and industry organizations, there were significant differences in epilepsy diagnosis methods (p< 0.05) and SUDEP yearly incidence for both adults and children (p< 0.02). Across populations (adult vs both adult/peds), there were significant differences among inclusion of epilepsy definition (p< 0.04) and SUDEP yearly incidence for both (p< 0.01). PEMs that addressed both the adult and pediatric population more often included at least 75% of the SUDEP-related topics (p< 0.03).