Communication About Sudden Unexpected Death in Epilepsy: An Adaptation of the SPIKES Protocol.

Background: Sudden unexpected death in epilepsy (SUDEP) is a common cause of premature death in children and adults with epilepsy. People with epilepsy and their caregivers prefer the risk of SUDEP to be disclosed by their clinicians; however, few tools exist to support these conversations.

Methods: We aimed to (1) characterize SUDEP communication preferences of clinicians and caregivers of children with epilepsy, and (2) leverage these preferences to develop a conversation guide to support the discussion of SUDEP risk.

A Multicenter Retrospective Observational Cohort Study of Seizure Freedom before Lennox-Gastaut Syndrome (the "Gap"). Opportunities for Prevention.

Objective: Lennox-Gastaut Syndrome (LGS) is a severe, often treatment-resistant epilepsy syndrome typically diagnosed in early childhood. Many have seizures before diagnosis. Some have periods of seizure freedom before treatment resistance, i.

Clinical trials for Lennox-Gastaut syndrome: Challenges and priorities.

Objective: Lennox-Gastaut syndrome (LGS) is a severe, childhood-onset epilepsy that is typically refractory to treatment. We surveyed the current landscape of LGS treatment, aiming to identify challenges to the development of efficacious therapies, and to articulate corresponding priorities toward clinical trials that improve outcomes.

Methods: The LGS Special Interest Group of the Pediatric Epilepsy Research Consortium integrated evidence from the literature and expert opinion, into a narrative review.

Pediatric Palliative Epilepsy Surgery: A Report From the Pediatric Epilepsy Research Consortium (PERC) Surgery Database.

Background: Epilepsy surgery is an underutilized resource for children with drug-resistant epilepsy. Palliative and definitive surgical options can reduce seizure burden and improve quality of life. Palliative epilepsy surgery is often seen as a "last resort" compared to definitive surgical options.

Implications of Large Language Models for Quality and Efficiency of Neurologic Care: Emerging Issues in Neurology.

Large language models (LLMs) are advanced artificial intelligence (AI) systems that excel in recognizing and generating human-like language, possibly serving as valuable tools for neurology-related information tasks. Although LLMs have shown remarkable potential in various areas, their performance in the dynamic environment of daily clinical practice remains uncertain. This article outlines multiple limitations and challenges of using LLMs in clinical settings that need to be addressed, including limited clinical reasoning, variable reliability and accuracy, reproducibility bias, self-serving bias, sponsorship bias, and potential for exacerbating health care disparities.

A multi-center comparison of surgical techniques for corpus Callosotomy in pediatric drug-resistant epilepsy.

Objectives: Corpus callosotomy (CC) is used to reduce seizures, primarily in patients with generalized drug-resistant epilepsy (DRE). The invasive nature of the procedure contributes to underutilization despite its potential superiority to other palliative procedures. The goal of this study was to use a multi-institutional epilepsy surgery database to characterize the use of CC across participating centers.

Pediatric Mental Health Emergencies During 5 COVID-19 Waves in New York City.

Objectives: To describe the proportion of pediatric mental health emergency department (MH-ED) visits across 5 COVID-19 waves in New York City (NYC) and to examine the relationship between MH-ED visits, COVID-19 prevalence, and societal restrictions.

Methods: We conducted a time-series analysis of MH-ED visits among patients ages 5 to 17 years using the INSIGHT Clinical Research Network, a database from 5 medical centers in NYC from January 1, 2016, to June 12, 2022. We estimated seasonally adjusted changes in MH-ED visit rates during the COVID-19 pandemic, compared with predicted prepandemic levels, specific to each COVID-19 wave and stratified by mental health diagnoses and sociodemographic characteristics.

Creating rare epilepsy cohorts using keyword search in electronic health records.

Objective: Administrative codes to identify people with rare epilepsies in electronic health records are limited. The current study evaluated the use of keyword search as an alternative method for rare epilepsy cohort creation using electronic health records data.

Methods: Data included clinical notes from encounters with International Classification of Diseases, Ninth Revision (ICD-9) codes for seizures, epilepsy, and/or convulsions during 2010-2014, across six health care systems in New York City.

Early Clinical Variables Associated With Refractory Convulsive Status Epilepticus in Children.

Background And Objectives: The objective of this study was to determine patient-specific factors known proximate to the presentation to emergency care associated with the development of refractory convulsive status epilepticus (RSE) in children.

Methods: An observational case-control study was conducted comparing pediatric patients (1 month-21 years) with convulsive SE whose seizures stopped after benzodiazepine (BZD) and a single second-line antiseizure medication (ASM) (responsive established status epilepticus [rESE]) with patients requiring more than a BZD and a single second-line ASM to stop their seizures (RSE). These subpopulations were obtained from the pediatric Status Epilepticus Research Group study cohort.

COVID-19 is Observed in Older Children During the Omicron Wave in New York City.

Background: The Omicron variant of SARS-CoV-2 has a predilection for the upper airways, causing symptoms such as sore throat, hoarse voice, and stridor.

Objective: We describe a series of children with COVID-19-associated croup in an urban multicenter hospital system.

Methods: We conducted a cross-sectional study of children ≤18 years of age presenting to the emergency department during the COVID-19 pandemic.

Multicenter Assessment of Sturge-Weber Syndrome: A Retrospective Study of Variations in Care and Use of Natural History Data.

Background: We summarize the history of individuals with Sturge-Weber syndrome (SWS) to inform clinical trial design and identify variations in care.

Methods: We performed retrospective chart review of individuals with SWS from centers in New York City. We characterized data quality using a novel scoring system.

Indications for Hospitalization in Children with SARS-CoV-2 Infection during the Omicron Wave in New York City.

The emergence of the Omicron variant was accompanied by an acute increase in COVID-19 cases and hospitalizations in New York City. An increased incidence of COVID-19-associated croup in children during the Omicron wave has been recognized, suggesting that there may be other changes in clinical symptoms and severity. To better understand clinical outcomes and health care utilization in children infected with SARS-CoV-2 during the Omicron wave, we performed a cross-sectional study in pediatric patients aged ≤18 years who were tested for SARS-CoV-2 in pediatric emergency departments within a large medical system in New York City from 2 December 2021 to 23 January 2022.

Reproductive Health Counseling in Adolescent Women With Epilepsy: A Single-Center Study.

Background: Counseling adolescent women with epilepsy (WWE) about reproductive health (contraception, sexual activity, and menstruation) is important given the teratogenicity of many antiseizure medications and high rates of contraception failure. Only a third of adolescent WWE report discussing contraception with their epileptologists, demonstrating a significant gap in counseling.

Methods: We assessed factors associated with reproductive health counseling by pediatric neurologists via a retrospective chart review of adolescent (aged 12-18 years) WWE seen at a pediatric neurology clinic from 2018 to 2020.

Inequities in Therapy for Infantile Spasms: A Call to Action.

Objective: The aim of this study was to determine whether selection of treatment for children with infantile spasms (IS) varies by race/ethnicity.

Methods: The prospective US National Infantile Spasms Consortium database includes children with IS treated from 2012 to 2018. We examined the relationship between race/ethnicity and receipt of standard IS therapy (prednisolone, adrenocorticotropic hormone, vigabatrin), adjusting for demographic and clinical variables using logistic regression.

Pediatric Epilepsy Learning Healthcare System Quality of Life (PELHS-QOL-2): A novel health-related quality of life prompt for children with epilepsy.

Objective: Pediatric epilepsy is often associated with diminished health-related quality of life (HRQOL). Our aim was to establish the validity of the Pediatric Epilepsy Learning Healthcare System Quality of Life (PELHS-QOL-2) questions, a novel two-item HRQOL prompt for children with epilepsy, primarily for use in clinical care.

Methods: We performed a multicenter cross-sectional study to validate the PELHS-QOL-2.

Automated Identification of Surgical Candidates and Estimation of Postoperative Seizure Freedom in Children - A Focused Review.

Surgery is an effective but underused treatment for drug-resistant epilepsy in children. Algorithms to identify surgical candidates and estimate the likelihood of postoperative clinical improvement may be valuable to improve access to epilepsy surgery. We provide a focused review of these approaches.

Validating Coding for the Identification of Pediatric Treatment Resistant Epilepsy Patients.

The International Classification of Diseases (ICD) system includes sub codes to indicate that an individual with epilepsy is treatment resistant. These codes would be a valuable tool to identify individuals for quality improvement and population health, as well as for recruitment into clinical trials. However, the accuracy of these codes is unclear.

Medication selection, health services outcomes, and cost trajectories for Medicaid beneficiaries with infantile spasms.

Objective: There are three recommended first-line treatments for infantile spasms, adrenocorticotropic hormone (ACTH), oral corticosteroids, and vigabatrin, though non-standard treatments such as topiramate are sometimes selected. Is it uncertain how treatment selection influences health services outcomes.

Methods: We conducted a retrospective cohort study of Medicaid beneficiaries newly diagnosed with infantile spasms from 2009-2010.