Abstract Details

Title Recent Treatment Advances in Dravet Syndrome and Lennox-Gastaut Syndrome: Influence and Continuing Need for HCP and Caregiver Education

Topic Research Methodology, Education, and History

Presentation(s) Research Methodology and Education Posters (7:00 AM-5:00 PM)

Poster/Presentation
Number 050

Background Therapeutic advances for DS and LGS have left clinicians challenged to incorporate newer treatments into clinical practice. Caregivers are challenged to manage the clinical issues associated with DS and require supportive resources to alleviate their burden.

Objective To assess the influence of online continuing medical education (CME) and caregiver education in addressing: 1) clinician gaps on emerging data and treatment selection for Dravet Syndrome (DS) and Lennox-Gastaut Syndrome (LGS); and, 2) caregiver gaps on disease and stress management.

Design/Methods A multiple-part HCP and caregiver education launched live-online in 2020 and 2021, to remain on-demand through 2021. HCP and caregiver test questions were administered pre-, immediate post-, and 2 mos. post-activity. Responses from the test questions, audience polling, and 2 mos. follow-up survey behavioral questions were analyzed to determine engagement, lessons learned, and continuing gaps. McNemar test compared matched pair responses with Cohen’s d for effect size.

Results As of October, 2020, 120 of 1,109 HCP learners completed questions from all 3 time points: 63% reported a positive impact on patient experience, and 79% reported a positive impact on clinical practice. Of all test questions administered at follow-up to date, 8/8 reflected statistically significant improvements on: DS staging and characteristics, caregiver/patient burden, and therapeutic options. 57 of 566 caregiver education participants completed questions from all 3 time points: 63% reported a positive impact on communication with HCPs and 38% felt more prepared to manage DS, with 72 qualitative write-in examples provided (e.g. improvements in DS management and decision-making, etc.)

Conclusions Results supported the positive impact of live-online CME and caregiver education focused on improving knowledge/competency in applying emerging treatment strategies for DS and LGS, and on disease management/coping strategies for caregivers. Ongoing education is advised on: treatment algorithms, investigational therapies, transition to adult care, shared decision-making, and alleviating family burden.

Authors/Disclosures
Carole Drexel (PlatformQ LLC) PRESENTER	Carole Drexel has nothing to disclose.
	No disclosure on file
	No disclosure on file
Elizabeth Thiele, MD (Massachusetts General Hospital)	Dr. Thiele has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for GW Pharma/Jazz. Dr. Thiele has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for zogenix/UCB. Dr. Thiele has received personal compensation in the range of $500-$4,999 for serving as a Consultant for nobelpharma. An immediate family member of Dr. Thiele has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Thor labs. Dr. Thiele has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Biocodex. Dr. Thiele has received personal compensation in the range of $500-$4,999 for serving as a Consultant for takeda. Dr. Thiele has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Stoke Therapeutics. Dr. Thiele has received personal compensation in the range of $500-$4,999 for serving as a Consultant for livanova. Dr. Thiele has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Azurity. Dr. Thiele has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Marinus Pharmaceuticals. The institution of Dr. Thiele has received research support from GW Pharma/Jazz. The institution of Dr. Thiele has received research support from Zogenix/UCB. The institution of Dr. Thiele has received research support from Stoke Therapeutics.