Patient Journey in Status Epilepticus: Understanding Treatment Pathways, Outcomes, and Health Care Burden Using Patient Level Hospital Data
Megan Barra1, Sri Saikumar2, Saloni Shah2, Dushyant Katariya2, Adrienne Lovink2, Henrikas Vaitkevicius1, Eva Rybak1
1Marinus Pharmaceuticals, Inc., 2Trinity Life Sciences
Objective:
We aimed to characterize the various treatment pathways and clinical outcomes in patients across the status epilepticus (SE) continuum.   
Background:
SE is a common, life-threatening neurological emergency. Uncontrolled SE despite 1st and 2nd line therapy is considered refractory SE (RSE) and may require additional intravenous antiseizure medications (IV ASMs) or escalation to IV anesthesia (IVA). 
Design/Methods:

Hospital-based, service-level, all-payer US data from the PINC AI™ Healthcare Database (2018-2022) and Komodo Health Healthcare Map (2017-2022) were analyzed. Hospitalizations with an SE ICD-10 CM code at the admit, primary, or secondary diagnostic position were included. Episodes were categorized as: SE (benzodiazepine only); established SE (ESE; 1 benzodiazepine and 1 IV ASM); RSE (≥2 IV ASMs without IVA [RSE-noIVA] or ≥1 IV ASM with IVA and concomitant mechanical ventilation [MV, RSE-IVA]). Super-refractory SE (SRSE) described RSE-IVA and ≥2 days of MV.

Results:
This cross-sectional study examined 140,538 SE episodes in 113,229 unique patients over 5 years. SE was the admit, primary, or secondary diagnosis in 35%, 55% and 41% of episodes, respectively. Most episodes were categorized as SE (36%), ESE (19%), and RSE (45%). In patients with RSE, 41% received IVA and 11% progressed to SRSE. RSE-IVA patients had increased ICU and hospital length of stay (LOS) and in-hospital mortality vs RSE-noIVA or ESE cohorts. Even without IVA (RSE-noIVA), patients who received ≥3 IV ASMs had increased ICU admission, and longer ICU and hospital LOS than those responsive to 2 IV ASMs. One-third of episodes required inter-hospital transfers which were more common in RSE-IVA. Recurrent SE was observed in 20% of patients.
Conclusions:
Patients with SE have complex care pathways requiring specialized care and multi-institutional interactions. Treatment refractoriness and IVA exposure in SE is associated with increased ICU and hospital LOS and worse outcomes. Rapidly effective anti-SE treatments remain an urgent unmet need in this patient population.
10.1212/WNL.0000000000205004