Abstracts

Rationale: We surveyed clinician perception and understanding of educational material presented on sudden unexpected death in epilepsy (SUDEP) websites in order to direct families to best resources. We assessed clinicians’ ratings of how effectively a website provided relevant understanding of SUDEP including if they perceived that the website might be anxiety provoking for parents. Methods: Epilepsy clinicians from the University of Virginia (UVA) and Children’s National Medical Center (CNMC) filled out a 40 question online survey that rated the quality of SUDEP-related information found on 6 websites: if the material was helpful, easy to find, informative, and whether or not the websites may create undue anxiety to families. Results: 10 surveys (7 at UVA and 3 at CNMC) were collected. 60% of clinicians rated the Epilepsy Foundation’s (EF) website as their most preferred followed by the Centers of Disease Control and Prevention’s (CDC) and SUDEP Aware (SA) websites. Differences among sites included how Informative EF=70%; CDC=40%; SA=30%) the website was. Across other areas, only half or fewer of clinicians rated the websites positively in terms of whether the information was Easy to find (EF=50%; CDC=40%; EF=30%)or if parents will find the website helpful in understanding their child’s risk of SUDEP (EF=50%; CDC=50%; SA=30%). A minority of a clinicians perceived the websites as causing undue anxiety (EF=20%; CDC=10%; SA=30%), more than necessary even given the sensitive nature of the topic of SUDEP. Conclusions:  Information regarding epilepsy mortality risk and SUDEP are available to the general population; however, the extent to which this information is viewed as helpful is not known. By having clinicians systematically review websites, we identified websites that provide information but drawbacks may be that it is difficult to navigate to relevant information and not helpful to families.  Better understanding of the family perspective when navigating the same websites is the focus of ongoing work. While risk of mortality and SUDEP is a sensitive topic, information is widely available across several websites; however, the extent to which this information is accurate and helpful to families is not known. Funding: This study was supported by the BAND Foundation.