Disparities in Care in Pediatric Patients with Drug Resistant Epilepsy
Abstract number :
1.393
Submission category :
13. Health Services (Delivery of Care, Access to Care, Health Care Models)
Year :
2022
Submission ID :
2204506
Source :
www.aesnet.org
Presentation date :
12/3/2022 12:00:00 PM
Published date :
Nov 22, 2022, 05:25 AM
Authors :
Rakhi Das, PhD – University of Texas at Austin, Dell Medical School; Karala Robles-Lopez, PhD – University of Texas Austin, Dell Medical School; Yingchao Yuan, Senior Biostatistician – University of Texas Austin, Dell Medical School; Kendra Koch, PhD – kendra.koch@austin.utexas.edu; Valeria Cuellar, BA – University of Texas Austin, Dell Medical School; Bernadine Decapia, BSA – University of Texas Austin; Kristina Julich, MD – University of Texas at Austin, Dell Medical School; Nancy Nussbaum, PhD – University of Texas at Austin, Dell Medical School; Dave Clarke, MD – University of Texas at Austin, Dell Medical School
Rationale: Epilepsy affects 1 in 100 children under the age of 17 years. 39% of children with epilepsy have another developmental disability. There are multiple layers of inefficiencies in the care of children with epilepsy. Medical management, diet, and epilepsy surgery have been known modalities in care delivery since the early 1900s, yet many affected children still do not receive adequate care.
Methods: An IRB-approved retrospective chart review of pediatric patients with drug-resistant epilepsy is ongoing, with 96 patients analyzed to date. The review includes patients seen in the clinic or hospital at Dell Children’s Medical Center from January 1st, 2015 to December 30th, 2020. Retrieved in collaboration with the DCMC Safety and Quality Team, ICD-10 qualifiers were used to identify those with drug-resistant epilepsy. Race, ethnicity, insurance type, and socioeconomic background were evaluated. Seizure/epilepsy characteristics analyzed included seizure type, epilepsy syndrome, and epilepsy management-related data. Data were analyzed and reported in de-identified form. Descriptive analysis was performed using SAS 9.4.
Results: Of the 96 patients, 57 were male (59.4%) while 38 were female (39.6%). Geographic distribution revealed 78% from urban areas, 6.3% from rural areas, and 15.6% from outside of the 11 neighboring counties. The Hispanic/Latino population had the highest representation at 44.8%, followed by 39.6% White and 7.3% Black. The average time from seizure onset to DCMC, in clinic or hospital, was 27.8 months and to EMU was 43.2 months. Surgical procedures were performed in 55 patients and 39 had dietary management. To note, patients with government/federal insurance (76%) had a longer time to access to EMU after seizure onset (46.8 months), compared to those with private insurance (24%) with an average time of 32.5 months.
Conclusions: The main aim of this ongoing study is to identify ongoing deficits in the care of children with drug-resistant epilepsy to facilitate timely intervention. Prior studies have brought to the realization that historic sociodemographic, socioeconomic, racial, and ethnic disparities in care delivery persist. Our analysis, thus far, is heavily biased towards governmentally insured and non-medical management individuals. This poses a unique opportunity to study interventions that may specifically improve access for this patient population. There is also a racial/ethnic distribution of Hispanic versus non-Hispanic comparators for micro-analysis. Analysis of the entire cohort, when complete, will likely parcel out further concerning differences to be discussed at the upcoming AES meeting. Thought-provoking discussions and our ongoing analysis have fostered novel virtual diagnostic interventional studies at our center. We also propose and continue to advocate for reducing management delays in NIH-defined underrepresented populations (Blacks or African Americans, Hispanics or Latinos, American Indians or Alaska Natives, Native Hawaiians, and other Pacific Islanders), under and uninsured, and those of low socioeconomic status.
Funding: The Loretta and Jeff Clarke Foundation
Health Services (Delivery of Care, Access to Care, Health Care Models)