Mortality in Children and Young Adults with Epilepsy - Review of Electronic Health Records at Multiple Centers via the Pediatric Epilepsy Learning Healthcare System
Abstract number :
1.403
Submission category :
16. Epidemiology
Year :
2022
Submission ID :
2204722
Source :
www.aesnet.org
Presentation date :
12/3/2022 12:00:00 PM
Published date :
Nov 22, 2022, 05:26 AM
Authors :
Natasha Basma, MPH – Weill Cornell Medicine; Erika Axeen, MD – University of Virginia; Sonam Bhalla, MD – Emory University/ Children’s Healthcare of Atlanta; Jason Coryell, MD – Oregon Health & Sciences University; Daniel Friedman, MD – NYU Grossman School of Medicine; William Gaillard, MD – Children's National DC; Howard Goodkin, MD – University of Virginia; Kevin Gurcharran, MD – Weill Cornell Medicine; Tobias Loddenkemper, MD – Boston Children’s Hospital; Juma Mbwana, MD – Children's National Medical Center; Lindsey Morgan, MD – Seattle Children's Hospital; Anup Patel, MD – Nationwide Children's Hospital; Renee Shellhaas, MD – University of Michigan; Nilika Singhal, MD – University of California San Francisco; Janelle Wagner, MD – Medical University of South Carolina; Muhammad Zafar, MD – Duke University; Zachary Grinspan, MD – Weill Cornell Medicine
Rationale: Electronic health records (EHRs) may provide valuable information about mortality of children and young adults with epilepsy, and help guide interventions to reduce mortality.
Methods: We used EHR data from 12 centers via the Pediatric Epilepsy Learning Healthcare System to identify individuals aged 25 years or younger with an epilepsy diagnosis and a date of death. Each site reviewed the most recent 15-20 deaths. Investigators reviewed charts to extract demographics, comorbidity profile, epilepsy history, epilepsy etiology, circumstances of death, and counseling documented in the year before death. Data abstraction was standardized via REDCap. Primary and contributing causes of death were determined by the reviewing physician and not further adjudicated. A death was classified as “probable SUDEP” if SUDEP was selected as the primary cause of death, and “possible SUDEP” if selected as a contributing cause.
Results: We identified 141 decedents with epilepsy, median age of 9.0 years [range 2 months to 25 years, IQR 4.3-15.7 years], 46% female, 61% White, 18% Black, and 13% Hispanic. The primary cause of death was often unknown (32%), known but unrelated to epilepsy (26%), or due to an underlying neurological condition (24%). There were 25 (18%) deaths primarily due to epilepsy: 10 probable SUDEP, 8 status epilepticus, 5 medical/surgical complications of care, one medication toxicity, and one drowning. For an additional 18 decedents, epilepsy was a contributing cause (17 possible SUDEP, 16 aspiration pneumonia during or after a seizure, 11 status epilepticus, and 2 medical/surgical complications of care).
Twenty percent had at least one episode of status epilepticus requiring hospitalization in the year prior to death. Common comorbidities included intellectual disability (46%), cerebral palsy (44%), visual impairment (18%), microcephaly (18%), sleep-disordered breathing (15%), and autism/pervasive developmental disorder (10%). Technology dependence was also common: gastrostomy tube (48%), wheelchair (30%), tracheostomy (13%), and/or ventriculoperitoneal shunt (11%). In the month prior to death, most (70%) had at least one encounter with the health system, such as a phone call (29%), ambulatory care visit (32%), or ICU stay (25%). Forty percent died in hospital; 43% died at home (unexpected for 19% of total, hospice for 24% of total). In the 1 year prior to death, counseling was sometimes documented regarding rescue medication (33%), rarely documented for SUDEP (5%), nocturnal supervision (5%), anxiety/depression (1%), or driving (1%).
Conclusions: Multicenter EHR data collection supplemented by chart review is a feasible method to collect information about epilepsy mortality. These data suggest (a) prevention efforts might focus on SUDEP and status epilepticus; (b) there are opportunities for epilepsy specialists to intervene up to the end of life; and (c) there are opportunities to improve counseling practices. In ongoing work, we are using these data to (a) develop statistical models to stratify mortality risk and (b) identify and prioritize interventions to reduce mortality in high-risk children and young adults with epilepsy.
Funding: Pediatric Epilepsy Research Foundation, BAND Foundation
Epidemiology