How Often Do Patients with a New Epilepsy Diagnosis Remain Untreated?
Abstract number :
V.114
Submission category :
4. Clinical Epilepsy / 4C. Clinical Treatments
Year :
2021
Submission ID :
1826040
Source :
www.aesnet.org
Presentation date :
12/9/2021 12:00:00 PM
Published date :
Nov 22, 2021, 06:51 AM
Authors :
Barbara Decker, MD, MS - University of Vermont Medical Center; Emily Schriver, MS – University of Pennsylvania; Kelly Fischbein, RN, BSN, MBA, CPHQ – UCB Pharma, Smyrna; Debbie Smith, PhD – UCB Pharma, Smyrna; Jason Moyer, PhD – UCB Pharma, Smyrna; Danielle Mowery, PhD, MS, MS – University of Pennsylvania; Brian Litt, MD – University of Pennsylvania; Penn Epilepsy Center; Colin Ellis, MD – University of Pennsylvania; Penn Epilepsy Center; Chloe Hill, MD, MS – University of Michigan Medical School
Rationale: In the majority of cases, epilepsy is a treatable condition with initiation of antiseizure medication (ASM). However, medication initiation after an epilepsy diagnosis (≥ 2 seizures or one seizure plus additional risk factors) can be significantly delayed. Recent evidence from administrative claims data suggests as many as one-third of adult patients newly diagnosed with epilepsy in the United States remain untreated up to 3 years after diagnosis and that this delay may increase risk of adverse medical events, emergency department visits, and hospital admissions (Kalilani et al. Neurology 2019;92:e2197-e2208). In this study, we aimed to quantify and characterize this treatment gap within a large academic health care system.
Methods: This retrospective cohort study sought to evaluate the proportion of patients who remained untreated 3 years after initial epilepsy diagnosis within the University of Pennsylvania Health System (UPHS) from 2012 to 2020. To identify incident epilepsy, we applied the inclusion criteria of 1) two encounters for epilepsy/seizures (ICD-9 345.x, ICD-10 G40.x) or one diagnosis of epilepsy/seizures and one diagnosis of convulsions (ICD-9 780.3x, ICD-10 R56.x) (spaced 30 days to 2 years apart), and 2) no ASM prescription preceding the first epilepsy diagnosis. Continuous UPHS care was required, defined by at least one encounter ≥ 2 years prior to the first epilepsy diagnosis encounter and at least one encounter ≥ 3 years after the second epilepsy diagnosis encounter.
Results: We identified a total of 19,235 unique patients with any epilepsy/convulsion diagnosis within the UPHS electronic health records (EHR). Of this population, 831 patients were identified as having a new epilepsy diagnosis and met all inclusion criteria. Within this sample of patients with newly diagnosed epilepsy, 80 (9.6%) remained untreated 3 years after their first epilepsy diagnosis encounter.
Conclusions: Our study found a lower proportion of untreated patients with newly diagnosed epilepsy compared to previously reported rates from administrative claims data. Reasons for this discrepancy may include access to a comprehensive epilepsy center within the health care system, more frequent utilization of health care services, and/or regional differences in health care delivery. Further analyses are currently underway to investigate the association of patient, provider, and health system characteristics with untreated newly diagnosed epilepsy. Additionally, given the richness of data comprised by EHRs, details of clinical management can provide greater insight regarding reasons for nontreatment in the future. This work provides key insights about epilepsy treatment gaps. Investigating the drivers of untreated incident epilepsy may inform strategies for improving health outcomes in this vulnerable population.
Funding: Please list any funding that was received in support of this abstract.: This project is funded by UCB Pharma, NIH T32-NS-061779, NIH KL2TR002241, Mirowski Family Fdn, Susan Spencer MD Clin Research & Trng Scholarship in Epilepsy from AAN, and Jonathan & Bonnie Rothberg.
Clinical Epilepsy