Assessing seizure burden in pediatric epilepsy using an electronic medical record–based tool through a common data element approach

• DOI: 10.1111/epi.16934
• Publication Date: 2021-06-02T12:22:33Z
• Authors: Mark P. Fitzgerald; Michael C. Kaufman; Shavonne L. Massey; Sara Fridinger; Marisa Prelack; Colin Ellis; Xilma Ortiz‐Gonzalez; Lawrence E. Fried; Marissa P. DiGiovine; ; Susan Melamed; Marissa Malcolm; Brenda Banwell; Donna Stephenson; Stephanie M. Witzman; Alexander Gonzalez; Dennis Dlugos; Sudha Kilaru Kessler; Ethan M. Goldberg; Nicholas S. Abend; Ingo Helbig
• Keywords: Medical record; Pediatric epilepsy; Clinical neurology

Abstract Objective Improvement in epilepsy care requires standardized methods to assess disease severity. We report the results of implementing common data elements (CDEs) document history electronic medical record (EMR) after 12 months clinical use outpatient encounters. Methods Data regarding seizure frequency were collected during routine encounters using a CDE‐based form within our EMR. extracted CDE from EMR and developed measurements for severity improvement scores. Seizure burden was evaluated by patient demographic encounter variables in‐person telemedicine Results assessed total 1696 1038 individuals with childhood epilepsies between September 6, 2019 11, 2020 contributed 32 distinct providers. Childhood absence ( n = 121), Lennox‐Gastaut syndrome 86), Dravet 42) most syndromes. Overall, 43% (737/1696) had at least monthly seizures, 17% (296/1696) daily 18% (311/1696) seizure‐free >12 months. Quantification absolute changes over time differed syndromes, including high persistent patients syndrome. Individuals seen via or comparable frequencies. identifying as Hispanic/Latino, particularly postal codes lower median household incomes, more likely have ongoing seizures that worsened time. Significance Standardized documentation through can be implemented scale enables assessment burden, characterization Our provide insights into heterogeneous patterns control pediatric syndromes will inform future initiatives focusing on patient‐centered outcomes epilepsies, impact health disparities.