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Abstract Details

Understanding the Incidence, Prevalence, Characteristics, and Healthcare Resource Utilization for Patients With Dravet and Lennox-Gastaut Syndromes
General Neurology
P8 - Poster Session 8 (8:00 AM-9:00 AM)
11-003
To describe the real-world incidence and prevalence, patient characteristics, and healthcare resource utilization (HCRU) of patients with Dravet (DS) and Lennox-Gastaut (LGS) syndromes.
DS and LGS are severe developmental and epileptic encephalopathies associated with seizures and cognitive impairment. DS and LGS are highly treatment resistant, with poor seizure and non-seizure control.
This retrospective cohort analysis used real-world, administrative claims data from the Merative® MarketScan® US database from January 1, 2017, to December 31, 2022. Patients were required to have: a confirmed DS or LGS diagnosis using ICD-10 codes (DS and LGS codes were effective October 2020 and October 2015, respectively), complete enrollment for year of interest, and one calendar year baseline enrollment (30-day allowable gap) before January 1 of the year of interest. Outcomes assessed included yearly prevalence and incidence rates (primary), baseline patient sociodemographic characteristics, and baseline and follow-up HCRU. Descriptive statistics were used with no formal statistical comparisons.
579 and 7846 patients with DS and LGS were identified, respectively; mean age (SD) at index was 13.2 (10.9) years and 20.7 (15.4) years, respectively. From 2020-2022, DS incidence and prevalence per 100,000 years ranged from 0.41 (95% CI, 0.31-0.50) to 1.04 (0.89-1.19) and 0.93 (0.79-1.07) to 2.03 (1.82-2.23), respectively. From 2018-2022, LGS incidence and prevalence per 100,000 years ranged from 3.11 (2.85-3.37) to 6.38 (6.02-6.74) and 12.38 (11.91-12.85) to 19.55 (18.91-20.19), respectively. Median follow-up time in DS and LGS was 1.7 and 2.0 years, respectively. Mean 6-month total costs increased from baseline (DS: $36,735; LGS: $45,573) to follow-up (DS: $43,974; LGS: $49,176). Mean 6-month epilepsy-related outpatient visits increased from baseline (DS: 1.38; LGS: 1.74) to follow-up (DS: 6.30; LGS: 3.06).
This real-world study showed that LGS incidence and prevalence was higher than DS. Compared to pre-diagnosis baseline, HCRU increases were observed during follow-up in both DS and LGS.
Authors/Disclosures
Rejena Azad, PharmD (UCB)
PRESENTER
Dr. Azad has received personal compensation for serving as an employee of UCB Pharma.
Joseph E. Sullivan, MD Dr. Sullivan has received personal compensation in the range of $500-$4,999 for serving as a Consultant for BrightMinds. Dr. Sullivan has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for UCB. Dr. Sullivan has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for NeuroPace. Dr. Sullivan has stock in Zynerba. The institution of Dr. Sullivan has received research support from Stoke. The institution of Dr. Sullivan has received research support from Takeda. The institution of Dr. Sullivan has received research support from Neurocrine. The institution of Dr. Sullivan has received research support from Encoded. The institution of Dr. Sullivan has received research support from Zogenix.
Elaine C. Wirrell, MD, FAAN (Mayo Clinic/Dept of Child Neurology) Dr. Wirrell has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Biocodex. Dr. Wirrell has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Encoded. Dr. Wirrell has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Neurocrine. Dr. Wirrell has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for GRIN. Dr. Wirrell has received publishing royalties from a publication relating to health care.
Amelia Boehme, PhD Dr. Boehme has nothing to disclose.
Rebecca Zhang-Roper, MD, PhD Dr. Zhang-Roper has received personal compensation for serving as an employee of UCB. Dr. Zhang-Roper has stock in UCB.
Patrick Healy, MS Mr. Healy has stock in UCB Biosciences.
Amelie Lothe, PhD Dr. Lothe has received personal compensation for serving as an employee of UCB. Dr. Lothe has stock in UCB.
Wesley Kerr, MD, PhD (University of Pittsburgh) Dr. Kerr has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for SK Lifesciences. Dr. Kerr has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Biohaven Pharmaceuticals. Dr. Kerr has received personal compensation in the range of $500-$4,999 for serving as a Consultant for UCB. Dr. Kerr has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Neurelis. Dr. Kerr has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for QurAlis. Dr. Kerr has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Biohaven Pharmaceuticals. Dr. Kerr has received personal compensation in the range of $500-$4,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Epilepsia. The institution of Dr. Kerr has received research support from NINDS. The institution of Dr. Kerr has received research support from American Epilepsy Society. The institution of Dr. Kerr has received research support from 好色先生. The institution of Dr. Kerr has received research support from SK Life Science. The institution of Dr. Kerr has received research support from Biohaven Pharmaceuticals. Dr. Kerr has received publishing royalties from a publication relating to health care.