Describing the Population of Patients with Prolonged Seizures: US Subgroup Results from a Global Real-world Point-in-time Study
Eugen Trinka1, Matthew Walker2, Reetta Kalviainen3, Sheryl Haut4, John Stern5, Lawrence Hirsch6, Alexander Gillespie7, Laura LeBrocq7, Cedric Laloyaux8, Olaf Radunz8, J Claire Wilson9
1Department of Neurology, Neurocritical Care, and Neurorehabilitation, Member of European Reference Network EpiCARE, Center for Cognitive Neuroscience, Christian Doppler University Hospital, Paracelsus Medical University, Salzburg, Austria; Neuroscience Institute, Center for Cognitive Neuroscience, Christian Doppler University Hospital, Paracelsus Medical University, Salzburg, Austria; Institute of Public Health, Medical Decision Making and Health Technology Assessment, University for Health Sciences, Medical Informatics and Technology, Hall in Tirol, Austria, 2UCL Queen Square Institute of Neurology, Department of Clinical & Experimental Epilepsy, UCL, UK, 3Department of Neurology, School of Medicine, University of Eastern Finland and Kuopio Epilepsy Center, Kuopio, Finland, 4Montefiore Medical Center, Albert Einstein Center, Albert Einstein College of Medicine, NY, USA, 5Department of Neurology, University of California, Los Angeles, CA, USA, 6Comprehensive Epilepsy Center, Department of Neurology, Yale University, New Haven, CT, USA, 7Adelphi Real World, Bollington, UK, 8UCB, Brussels, Belgium, 9UCB, Slough, UK
Objective:
To describe patient characteristics, treatment usage, healthcare resource utilization (HCRU), and overall disease burden among people with epilepsy (PwE) with prolonged seizures (PS) in the United States (US).
Background:
PwE can experience PS, which may progress to status epilepticus (SE; seizure[s] lasting ≥5 minutes).
Design/Methods:
Data for the US subpopulation were drawn from RWE0807 Adelphi’s PS Disease Specific Programme™ (DSP), a real-world, point-in-time study conducted in France, Germany, Italy, Spain, United Kingdom, US, Japan, and China (March 2023–February 2024). Neurologists/epileptologists completed record forms for PwE aged ≥12 years who had received a stable antiseizure medication regimen and experienced ≥1 PS (lasting ≥2 minutes and/or longer than their normal seizures) in the prior 12 months. Data are reported for PwE with ≥1 PS, for both their PS and non-PS (lasting <2 minutes).
Results:
55 neurologists and 7 epileptologists completed records for 545 PwE experiencing PS. Median [Q1-Q3] patient age was 39.0 [29.0-50.0] years, 55% male, and 23% had someone responsible for their daily needs. 39% (n=192/497) of PwE with PS had ever experienced SE, and 24% experienced seizure clusters. During the prior 12 months, 27% of PwE had PS that progressed to SE; early ictal events were similarly experienced by PwE for PS (35%) and non-PS (37%) events. Seizure clusters (PS/non-PS: 14%/9%) and injuries (PS/non-PS: 21%/17%) were more commonly experienced by PwE for their PS than non-PS events. During the prior 12 months, a higher proportion of PwE with PS required HCRU for PS than non-PS. 70% of PwE with PS were currently prescribed rescue medication. 67% of PwE with PS had seizure action plans in place for PS.
Conclusions:
PwE experiencing PS in the US reported encountering progression to status epilepticus and/or seizure clusters, leading to HCRU. Better options for treating prolonged seizures are needed to prevent seizure progression to more severe states.
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