Fifteenyears of real‐world data on the use of vigabatrin in individuals with infantile epileptic spasms syndrome

• Published in: Epilepsia (Copenhagen) 2024-02, Vol.65 (2), p.430-444
• Main Authors: Kuchenbuch, Mathieu, Tommaso Lo Barco, Chemaly, Nicole, Chiron, Catherine, Nabbout, Rima
• Format: Article
• Language: English
• Subjects: Adverse events; Diagnosis; EEG; Electronic health records; Electronic medical records; Epilepsy; Seizures; Steroid hormones; Steroids
• ISSN: 0013-9580; 1528-1167
• DOI: 10.1111/epi.17808

ObjectiveThis study was undertaken to evaluate our treatment algorithm for infantile epileptic spasms syndrome (IESS) used between 2000 and 2018. We initiated vigabatrin (VGB), and steroids were added if the electroclinical response (spasms and electroencephalogram [EEG]) to VGB was not obtained or incomplete.MethodsIndividuals with IESS treated with VGB were recruited from our hospital clinical data warehouse based on electronic health records (EHRs) generated since 2009 and containing relevant keywords. We confirmed the diagnosis of IESS. Clinical, EEG, imaging, and biological data were extracted from the EHRs. We analyzed factors associated with short‐term response, time to response, relapse, time to relapse of spasms, and the presence of spasms at last follow‐up.ResultsWe collected data from 198 individuals (female: 46.5%, IESS onset: 6 [4.5–10.3] months, follow‐up: 4.6 [2.5–7.6] years, median [Q1–Q3]) including 129 (65.2%) with identifiable etiology. VGB was started 17 (5–57.5) days after IESS diagnosis. A total of 113 individuals were responders (57.1% of the cohort), 64 with VGB alone and 38 with VGB further combined with steroids (56.6% and 33.6% of responders, respectively). Among responders, 33 (29%) experienced relapses of spasms, mostly those with later onset of spasms (p = .002) and those who received VGB for