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Abstract Details

Mortality Rates and Risk Factors Among Patients with Lennox-Gastaut Syndrome or Dravet Syndrome
Epilepsy/Clinical Neurophysiology (EEG)
P9 - Poster Session 9 (5:00 PM-6:00 PM)
10-002
To examine mortality rates and patient-related characteristics in patients with Lennox-Gastaut Syndrome (LGS) or Dravet Syndrome (DS) using US claims data.
Patients with LGS or DS are at risk of premature mortality. Large mortality studies in DS and LGS are limited.
This retrospective study used the Komodo database from 1/1/2015–12/31/2024. Eligible patients had: ≥2 LGS (ICD-10, G40.81) or DS (ICD-10, G40.83) claims ≥1 month apart in patient qualification period (1/1/2015–12/31/2023), and 12 months of pre-index data. The index date was 1/1/2018 or the second LGS or DS claim date (if claim date ≥30 days after first claim), whichever occurred later. Study exit date was date of death, last recorded claim, or study end date. The primary endpoint evaluated LGS and DS mortality rates per 1000 person-years (PY) and standardized mortality ratios (SMRs), stratified by age and healthcare resource utilization (HCRU) severity score.
Overall, 33,404 and 2781 patients with LGS and DS were identified, respectively. Mortality rates (95% CI) in LGS and DS: 14.2 (13.6; 14.8) and 7.3 (5.6; 9.4) per 1000 PY, respectively; SMRs (95% CI): 7.5 (7.2; 7.8) and 7.8 (6.0; 10.1), respectively. In LGS, pediatric (<18 years; n=16,984) and adult (≥18 years; n=16,420) mortality rates: 12.1 (11.3; 12.9) and 16.3 (15.4; 17.2) per 1000 PY, respectively. In DS, pediatric (n=2045) and adult (n=736) mortality rates: 6.7 (4.8; 9.1) and 9.1 (5.5; 14.2) per 1000 PY, respectively. In LGS and DS, SMRs were higher in pediatric patients vs adults. Higher mortality rates and SMRs were observed in patients with higher HCRU severity scores. In combined LGS and DS populations, Cox models indicated significant associations with clinical and demographic characteristics and mortality.
Patients with LGS or DS are at an increased risk of mortality, especially in younger patients and those with severe disease.
Authors/Disclosures
Jaya S. Khushalani, MD, PhD
PRESENTER 		Dr. Khushalani has received personal compensation for serving as an employee of UCB. Dr. Khushalani has or had stock in UCB.
Elizabeth Donner, MD, FRCPC (The Hospital for Sick Children) Dr. Donner has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Eisai. Dr. Donner has received personal compensation in the range of $500-$4,999 for serving as a Consultant for UCB. Dr. Donner has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Pendopharm. Dr. Donner has received personal compensation in the range of $500-$4,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Seizure. The institution of Dr. Donner has received research support from SickKids Centre for Brain and Mental Health. The institution of Dr. Donner has received research support from Ontario Brain Institute. The institution of Dr. Donner has received research support from CIHR.
Tracy Dixon-Salazar Tracy Dixon-Salazar has received personal compensation for serving as an employee of Lennox-Gastaut Syndrome (LGS) Foundation.
DANIEL S. LLOYD Mr. LLOYD has received personal compensation for serving as an employee of UCB.
Heidi L. Henninger, MD, FAAN Dr. Henninger has received personal compensation in the range of $500-$4,999 for serving as a Consultant for UCB.
Marcus Brunnert Mr. Brunnert has received personal compensation for serving as an employee of UCB Biosciences GmbH. Mr. Brunnert has stock in Amgen.
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.