Epileptic Status in a PEDiatric cohort (ESPED) requiring intensive care treatment: A multicenter, national, two‐year prospective surveillance study

OBJECTIVE: The aim of this study was to provide seizure etiology, semiology, underlying conditions, and out‐of‐ and in‐hospital diagnostics, treatment, and outcome data on children with out‐of‐ or in‐hospital‐onset status epilepticus (SE) according to the International League Against Epilepsy definition that required admission to the pediatric intensive care unit (PICU) for ≥4 hours. METHODS: This prospective national surveillance study on SE in childhood and adolescence was conducted over 2 years (07/2019‐06/2021). RESULTS: This study examined 481 SE episodes in 481 children with a median age of 43 months (1 month to 17 years 11 months), of which 46.2% were female and 50.7% had a previous seizure history. The most frequent acute SE cause was a prolonged, complicated febrile seizure (20.6%). The most common initial seizure types were generalized seizures (49.9%), focal seizures (18.0%), and unknown types (12.1%); 40.5% of patients suffered from refractory SE and 5.0% from super‐refractory SE. The three most common medications administered by nonmedically trained individuals were diazepam, midazolam, and antipyretics. The three most frequent anti‐seizure medications (ASMs) administered by the emergency physician were midazolam, diazepam, and propofol. The three most common ASMs used in the clinical setting were midazolam, levetiracetam, and phenobarbital. New ASMs administered included lacosamide, brivaracetam, perampanel, stiripentol, and eslicarbazepine. Status epilepticus terminated in 16.0% in the preclinical setting, 19.1% in the emergency department, and 58.0% in the PICU; the outcome was unknown for 6.9%. The median PICU stay length was 2 (1–121) days. The median modified Rankin scale was 1 (0–5) on admission and 2 (0–6) at discharge. New neurological deficits after SE were observed in 6.2%. The mortality rate was 3.5%. SIGNIFICANCE: This study provides current real‐world out‐of‐ and in‐hospital data on pediatric SE requiring PICU admission. New ASMs are more frequently used in this population. This knowledge may help generate a more standardized approach.