ArticleEpilepsia2021
Assessing seizure burden in pediatric epilepsy using an electronic medical record-based tool through a common data element approach.
Article in Epilepsia, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers.
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Who cites it
12 citing papers in PubMed, 29 citations in OpenAlex.
- Surgical re-evaluation patterns among pediatric vagus nerve stimulation non-responders: a single-center retrospective study.Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery · 2026Article
- Optimal approach to standardized documentation in epilepsy clinics: A scoping review.Epilepsia · 2026Article
- The Medical Burden of Drug-Resistant Epilepsy in an Outpatient Clinic of a Tertiary Hospital: A Prospective Study Based on Real-World Evidence.European journal of neurology · 2025Article
- A research roadmap for SCN8A-related disorders: addressing knowledge gaps and aligning research priorities across stakeholders.Orphanet journal of rare diseases · 2025Article
- Toward Better Semantic Interoperability of Data Element Repositories in Medicine: Analysis Study.JMIR medical informatics · 2024Article
- Clinical features and underlying etiology of children with Lennox-Gastaut syndrome.Journal of neurology · 2024Article
- Disparities in seizure outcomes revealed by large language models.Journal of the American Medical Informatics Association : JAMIA · 2024Article
- Delineating clinical and developmental outcomes in STXBP1-related disorders.Brain : a journal of neurology · 2023Article
- Design, implementation, and inferential issues associated with clinical trials that rely on data in electronic medical records: a narrative review.BMC medical research methodology · 2023Review
- Disparities in seizure outcomes revealed by large language models.medRxiv : the preprint server for health sciences · 2023Article
- Computational analysis of neurodevelopmental phenotypes: Harmonization empowers clinical discovery.Human mutation · 2022Review
- Caregiver assessment of quality of life in individuals with genetic developmental and epileptic encephalopathies.Developmental medicine and child neurology · 2022Article
Corrections and comments
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Authors and funding
21 authors at 1 institution in 1 country.
Funding
Abstract
objectiveImprovement in epilepsy care requires standardized methods to assess disease severity. We report the results of implementing common data elements (CDEs) to document epilepsy history data in the electronic medical record (EMR) after 12 months of clinical use in outpatient encounters.
methodsData regarding seizure frequency were collected during routine clinical encounters using a CDE-based form within our EMR. We extracted CDE data from the EMR and developed measurements for seizure severity and seizure improvement scores. Seizure burden and improvement was evaluated by patient demographic and encounter variables for in-person and telemedicine encounters.
resultsWe assessed a total of 1696 encounters in 1038 individuals with childhood epilepsies between September 6, 2019 and September 11, 2020 contributed by 32 distinct providers. Childhood absence epilepsy (n = 121), Lennox-Gastaut syndrome (n = 86), and Dravet syndrome (n = 42) were the most common epilepsy syndromes. Overall, 43% (737/1696) of individuals had at least monthly seizures, 17% (296/1696) had a least daily seizures, and 18% (311/1696) were seizure-free for >12 months. Quantification of absolute seizure burden and changes in seizure burden over time differed between epilepsy syndromes, including high and persistent seizure burden in patients with Lennox-Gastaut syndrome. Individuals seen via telemedicine or in-person encounters had comparable seizure frequencies. Individuals identifying as Hispanic/Latino, particularly from postal codes with lower median household incomes, were more likely to have ongoing seizures that worsened over time. SIGNIFICANCE: Standardized documentation of clinical data in childhood epilepsies through CDE can be implemented in routine clinical care at scale and enables assessment of disease burden, including characterization of seizure burden over time. Our data provide insights into heterogeneous patterns of seizure control in common pediatric epilepsy syndromes and will inform future initiatives focusing on patient-centered outcomes in childhood epilepsies, including the impact of telemedicine and health care disparities.
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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.