Abstract Details

Title Clinical Decision Support to Promote SUDEP Discussions

Topic Child Neurology and Developmental Neurology

Presentation(s) P5 - Poster Session 5 (5:30 PM-6:30 PM)

Poster/Presentation
Number 7-051

Objective Increase SUDEP discussions in clinics.

Background Children with generalized tonic-clonic seizures have at least a 1/4500 risk of sudden unexpected death in epilepsy (SUDEP). Studies show families want counseling on SUDEP. Professional organizations recommend clinicians caring for these children advise families of this important risk, yet studies of neurologists demonstrate the majority do not.

Design/Methods We developed a SUDEP module for an existing clinical decision support system, Child Health Improvement through Computer Automation (CHICA), that runs in five primary care pediatric clinics. It inserts a question asking about seizures into an electronic waiting room survey for caregivers. For children with seizures, CHICA then asks about seizure frequency, medication adherence and barriers to accessing care; reports this to the physicians through the electronic health record; and prompts them to discuss SUDEP. The physician can document discussing SUDEP and provide risk-based, computer-generated educational materials. Prior to the intervention, we called parents of children with epilepsy from the study clinics to determine whether they had discussed SUDEP with their physicians.

Results To date, 73 patients were surveyed pre-intervention. Mean age was 10.8 years (range 1 to 19.5), 51% were female, and 70% received epilepsy care from a pediatric neurologist (19% from general pediatrician). Only 29% of parents had heard of SUDEP. Overall, 22% of parents reported their physicians talked with them about SUDEP; 94% of them were glad they had. CHICA has screened 2350 children for epilepsy; 31 (1.3%) reported seizures. 19/31 (61%) physicians that CHICA reminded to discuss SUDEP reporting doing so.

Conclusions Less than 1/3 of parents of children with epilepsy had heard of SUDEP; even fewer had spoken with a physician about it. With a computer-based reminder system intervention, the majority of physicians reported discussing SUDEP. Final results are pending, but computerized decision support appears promising for increasing SUDEP discussions in at-risk patients.

Authors/Disclosures
Stephen Downs PRESENTER	Stephen Downs has stock in Digital Health Solutions. The institution of Stephen Downs has received research support from Child Neurology Foundation.
	No disclosure on file
Jeffrey R. Buchhalter, MD, FAAN (Buchhalter Consulting PLLC)	Dr. Buchhalter has received personal compensation in the range of $50,000-$99,999 for serving as a Consultant for Epilepsy Foundation. Dr. Buchhalter has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Epilepsy Study Consortium. Dr. Buchhalter has received personal compensation in the range of $500-$4,999 for serving as a Consultant for UCB. Dr. Buchhalter has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Biocodex. Dr. Buchhalter has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for UCB. Dr. Buchhalter has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Biocodex. Dr. Buchhalter has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Neurona.
Anup D. Patel, MD, FAAN (Nationwide Children's Hospital and the Ohio State University College of Medicine)	Dr. Patel has received personal compensation in the range of $500-$4,999 for serving as a Consultant for UCB Pharma. Dr. Patel has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Lundbeck. The institution of Dr. Patel has received research support from PCORI. Dr. Patel has received personal compensation in the range of $10,000-$49,999 for serving as a Webinar Development with Medscape. Dr. Patel has received personal compensation in the range of $500-$4,999 for serving as a Other capacity with Guidepoint. Dr. Patel has a non-compensated relationship as a Chair Quality Committee with AAN that is relevant to AAN interests or activities. Dr. Patel has a non-compensated relationship as a Committee Member with Child Neurology Society that is relevant to AAN interests or activities. Dr. Patel has a non-compensated relationship as a Board of Directors - member with AAN Institute that is relevant to AAN interests or activities.
Amy Brin (Child Neurology Foundation)	No disclosure on file
Ann Clark, PharmD	No disclosure on file
Mary J. Holmay, RN, BSN (Greenwich Biosciences (GW Pharmaceuticals))	No disclosure on file
Tyler J. Story, PhD (UCB Inc)	No disclosure on file

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