Authors :
Sena Kucukkarca, - University of Texas at Austin; Andrew T. Ta – Research Assistant, University of Texas at Austin; Prachi Shah, Undergraduate – Research Assistant, University of Texas at Austin; Rosa Juan, BSA – Research Assistant, University of Texas at Austin; Caitlyn Wilson, BS – Research Assistant, University of Texas at Austin; Karen Skjei, MD, ABPN – Principal Investigator, Neurology, UT Austin: Dell Medical School
Rationale: Health disparities and inequities (HDI) affect people of color and those with limited English proficiency (LEP), socioeconomic disadvantages and/or lacking private health insurance. Immigrants, representing 15% of the US population, experience multiple barriers to high quality care. We hypothesize that Hispanic ethnicity and LEP will be additive risk factors for poor pediatric epilepsy outcomes, and that language concordance between caregivers and providers will ameliorate the HDI affecting Spanish-speaking immigrants with LEP.
Methods: We are conducting a randomized controlled trial comparing 4 pediatric epilepsy populations longitudinally over 5 years:
- Spanish-speaking LEP patients/caregivers seen by language concordant (Spanish-fluent) providers
- Spanish-speaking LEP patients/caregivers seen by language-discordant providers with interpreters
- English-proficient Hispanic patients/caregivers, and
- English-proficient white, non-Hispanic patients/caregivers.
Patients and families are recruited prior to their new patient appointment. Detailed demographic data are obtained and questionnaires addressing epilepsy knowledge, medication side effects/adherence, trust in provider, and epilepsy and psychosocial outcome are administered at intake and every 6 months. Provider documentation, evaluation patterns, diagnoses, medications and referrals are obtained from the EMR at similar time points. Patient no-show rate and medication refill history are obtained.
Results: More than 40 families have been enrolled. Preliminary data suggest:
- LEP patients, as compared to English speaking patients, are more likely to be referred to Neurology by their pediatricians than by hospitals/EDs.
- Among patients referred by their pediatrician, Hispanic patients, regardless of English proficiency, experience longer delays between referral and the new patient appointment.
- LEP and Hispanic ethnicity are both risk factors for lower epilepsy knowledge, and effects are additive.
Logistical challenges have included a low recruitment rate among LEP families and poor show-rates for follow-up visits.
Conclusions: Adult LEP epilepsy patients and adult and pediatric Hispanic epilepsy patients experience worse epilepsy outcomes, but the etiology of these disparities is unclear. This study is documenting the extent of epilepsy and psychosocial disparities among Hispanic pediatric epilepsy patients and families, and explores the potential contributions of LEP, health literacy, socioeconomic status and insurance status, among other factors, to these outcomes. The effect of language concordance between patient and provider, which has been demonstrated to improve some outcomes in the primary care setting, is assessed. Preliminary data suggest that Hispanic patients with and without LEP arrive at their new patient appointments already at a disadvantage.
Funding: Please list any funding that was received in support of this abstract.: The Dell Children’s Foundation Trust.