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Health Disparities in Epilepsy Care

NOMINATED TOPIC | June 3, 2022

1. What is the decision or change (e.g., clinical topic, practice guideline, system design, delivery of care) you are facing or struggling with where a summary of the evidence would be helpful?

Health disparities in adult and pediatric epilepsy outcomes exist based on race/ethnicity, socioeconomic status, insurance status and English proficiency. The factors that contribute to these disparities are still being explored, but likely include patient factors (education/health literacy/cultural beliefs, trust, socioeconomic resources), provider factors (cultural competency, bias, fluency in languages other than English) and systemic factors (availability of health insurance, quality of health insurance, training for providers, appointment duration, etc). As the underlying mechanisms driving these disparities remain unclear, few interventions have successfully impacted health outcomes.

2. Why are you struggling with this issue?

Studies documenting disparities rarely address the underlying mechanisms that create these disparities. For example, demographic and socioeconomic data are not collected or are collected but not analyzed, and/or certain populations are excluded from research (e.g., minorities, people with limited-English proficiency).

3. What do you want to see changed? How will you know that your issue is improving or has been addressed?

We have gotten past the point of simply documenting the existence of health and healthcare disparities. Researchers need guidelines on additional factors (e.g., race/ethnicity, acculturation, socioeconomic status, insurance status, adherence, education/health literacy, English proficiency) that should be collected and analyzed in order to identify the factors driving these disparities. In addition to listing these factors, specific tools and measures to assess these factors should be provided or recommended. Until these factors are included in research, we will be unable to design effective interventions to reduce these disparities.

4. When do you need the evidence report?

Sun, 12/31/2023

5. What will you do with the evidence report?

Re. prior question on timeline: The sooner the information is available, the sooner we can design research that helps illuminate the paths we must take at every level (patient, provider, and system) to move successfully towards health equity. While AES members feel the need for an evidence review as soon as possible, AES understands the time needed for conducting a rigorous evidence review. If the topic is selected, the AES GAC will use the up to 2-year timeframe to organize resources and prepare for prompt clinical guidance implementation activities. For this reason, there is flexibility in the date suggested in the prior question.

With a rigorous AHRQ-supported evidence report, more comprehensive research methods can be applied to begin to systematically study the factors underlying health disparities.

The AES Guidelines and Assessment Committee (GAC) will review the evidence report as a basis for clinical guidance development and/or member education activity and program opportunities, both at the AES Annual Meeting and through year-round online educational offerings. Please see the attached summary of AES and the resources it brings to translation of an evidence review to clinical guidance as well as advancing dissemination and implementation of results through an extensive multidisciplinary network.

AES and the GAC welcome the opportunity to discuss the need for this topic in more depth and to connect AHRQ with its member volunteer topic experts as well as representatives from its patient stakeholder network, as needed in further exploring the topic and/or development of the evidence review, should the topic be selected.

Supporting References

  • AHRQ EPC Evidence Review Topic Submission: Health Disparities in Epilepsy Care
  • Baca CB, Vickrey BG, Vassar S, et al. Time to pediatric epilepsy surgery is related to disease severity and nonclinical factors. Neurology. 2013;80(13):1231-1239.
  • Begley C, Basu R, Lairson D, et al. Socioeconomic status, health care use, and outcomes: persistence of disparities over time. Epilepsia. 2011;52(5):957-964. doi:10.1111/j.1528-1167.2010.02968.x
  • Betjemann JP, Thompson AC, Santos-Sánchez C, Garcia PA, Ivey SL. Distinguishing language and race disparities in epilepsy surgery. Epilepsy Behav. 2013;28(3):444-449.
  • Bjur KA, Wi CI, Ryu E, Derauf C, Crow SS, King KS, Juhn YJ. Socioeconomic Status, Race/Ethnicity, and Health Disparities in Children and Adolescents in a Mixed Rural-Urban Community-Olmsted County, Minnesota. Mayo Clin Proc. 2019 Jan;94(1):44-53. doi: 10.1016/j.mayocp.2018.06.030. PMID: 30611453; PMCID: PMC6360526.
  • Cui W, Kobau R, Zack MM, Helmers S, Yeargin-Allsopp M. Seizures in children and adolescents aged 6-17 years—United States, 2010-2014. Morbid Mortal Wkly Rep 64:1209-1214,2015.
  • Greenlund SF, Croft JB, Kobau R. Epilepsy by the Numbers: Epilepsy deaths by age, race/ethnicity, and gender in the United States significantly increased from 2005 to 2014. Epilepsy Behav. 2017;69:28-30.
  • Didsbury MS, Kim S, Medway MM, Tong A, McTaggart SJ, Walker AM, White S, Mackie FE, Kara T, Craig JC, Wong G. Socio-economic status and quality of life in children with chronic disease: A systematic review. J Paediatr Child Health. 2016 Dec;52(12):1062-1069. doi: 10.1111/jpc.13407. PMID: 27988995.
  • Gregerson CHY, Bakian AV, Wilkes J, et al. Disparities in Pediatric Epilepsy Remission Are Associated With Race and Ethnicity. J Child Neurol. 2019;34(14):928-936.
  • Grinspan ZM, Patel AD, Hafeez B, Abramson EL, Kern LM. Predicting frequent emergency department use among children with epilepsy: A retrospective cohort study using electronic health data from 2 centers. Epilepsia. 2018;59(1):155-169.
  • Hauptman JS, Dadour A, Oh T, Baca CB, Vickrey BG, Vassar SD, Sankar R, Salamon N, Vinters HV, Mathern GW. Sociodemographic changes over 25 years of pediatric epilepsy surgery at UCLA. J Neurosurg Pediatr. 2013 Mar;11(3):250-5. doi: 10.3171/2012.11.PEDS12359. Epub 2013 Jan 18. PMID: 23331214; PMCID: PMC3832187.
  • Hope OA, Zeber JE, Kressin NR, Bokhour BG, Vancott AC, Cramer JA, Amuan ME, Knoefel JE, Pugh MJ. New-onset geriatric epilepsy care: Race, setting of diagnosis, and choice of antiepileptic drug. Epilepsia. 2009 May;50(5):1085-93. doi: 10.1111/j.1528-1167.2008.01892.x. Epub 2008 Nov 17. PMID: 19054416.
  • Kim H, Thurman DJ, Durgin T, Faught E, Helmers S. Estimating Epilepsy Incidence and Prevalence in the US Pediatric Population Using Nationwide Health Insurance Claims Data. J Child Neurol. 2016;31(6):743-749.
  • Lekoubou A, Bishu KG, Ovbiagele B. Nationwide Healthcare utilization among children with epilepsy in the United States: 2003-2014. Epilepsy Res. 2018;141:90-94.
  • McClelland S 3rd, Curran CC, Davey CS, Okuyemi KS. Intractable pediatric temporal lobe epilepsy in the United States: examination of race, age, sex, and insurance status as factors predicting receipt of resective treatment. J Neurosurg. 2007;107(6 Suppl):469-473.
  • Myers L, Lancman M, Vazquez-Casals G, Bonafina M, Perrine K, Sabri J. Depression and Quality of Life in Spanish-speaking Immigrant Persons with Epilepsy Compared With Those in English-speaking US-born Persons With Epilepsy. Epilepsy Behav. 2015 Oct;51:146-51.
  • Nunley, S., Glynn, P., Rust, S., Vidaurre, J., Albert, D. V. F., & Patel, A. D. (2018). Healthcare Utilization Characteristics for Intranasal Midazolam Versus Rectal Diazepam. Journal of Child Neurology, 33(2), 158–163.
  • Okubo Y, Fallah A, Hayakawa I, Handa A, Nariai H. Trends in hospitalization and readmission for pediatric epilepsy and underutilization of epilepsy surgery in the United States. Seizure. 2020 Aug;80:263-269. doi: 10.1016/j.seizure.2020.05.013. Epub 2020 May 17. PMID: 32471799.
  • Pestana Knight EM, Schiltz NK, Bakaki PM, Koroukian SM, Lhatoo SD, Kaiboriboon K. Increasing utilization of pediatric epilepsy surgery in the United States between 1997 and 2009. Epilepsia. 2015;56(3):375-381.
  • Puka K, Smith ML, Moineddin R, Snead OC, Widjaja E. The influence of socioeconomic status on health resource utilization in pediatric epilepsy in a universal health insurance system. Epilepsia. 2016 Mar;57(3):455-63. doi: 10.1111/epi.13290. Epub 2016 Jan 19. PMID: 26785359.
  • Russ SA, Larson K, Halfon N. A national profile of childhood epilepsy and seizure disorder. Pediatrics. 2012 Feb;129(2):256-64. doi: 10.1542/peds.2010-1371. Epub 2012 Jan 23. PMID: 22271699.
  • Saadi A, Himmelstein DU, Woolhandler S, Mejia NI. Racial disparities in neurologic health care access and utilization in the United States. Neurology. 2017 Jun 13;88(24):2268-2275. doi: 10.1212/WNL.0000000000004025. Epub 2017 May 17. PMID: 28515272; PMCID: PMC5567325.
  • Sánchez Fernández I, Stephen C, Loddenkemper T. Disparities in epilepsy surgery in the United States of America. J Neurol. 2017;264(8):1735-1745.
  • Schiltz NK, Koroukian SM, Singer ME, Love TE, Kaiboriboon K. Disparities in access to specialized epilepsy care. Epilepsy Res. 2013;107(1-2):172-180.
  • Szaflarski M, Wolfe JD, Tobias JGS, Mohamed I, Szaflarski JP. Poverty, insurance, and region as predictors of epilepsy treatment among US adults. Epilepsy Behav. 2020;107:107050.
  • Thompson AC, Ivey SL, Lahiff M, Betjemann JP. Delays in Time to Surgery for Minorities With Temporal Lobe Epilepsy. Epilepsia. 2014 Sep;55(9):1339-46. doi: 10.1111/epi.12700. Epub 2014 Jul 9.
  • Tian N, Boring M, Kobau R, Zack MM, Croft JB. Active Epilepsy and Seizure Control in Adults — United States, 2013 and 2015. MMWR Morb Mortal Wkly Rep 2018;67:437–442. DOI: http://dx.doi.org/10.15585/mmwr.mm6715a1.
  • Vedantam A, Pan IW, Staggers KA, Lam SK. Thirty-day outcomes in pediatric epilepsy surgery. Childs Nerv Syst. 2018;34(3):487-494.
  • Wang TR, Bailey RC, Goodkin HP, Mahaney KB. Trends in intracranial monitoring for pediatric medically intractable epilepsy: 2000-2012. Neurology. 2018 Feb 27;90(9):e771-e778. doi: 10.1212/WNL.0000000000005021. Epub 2018 Jan 31. PMID: 29386277.

Supporting Documentation

About the American Epilepsy Society (AES) (PDF, 154 KB)

Optional Information About You

What is your role or perspective? Professional society

If you are you making a suggestion on behalf of an organization, please state the name of the organization American Epilepsy Society

May we contact you if we have questions about your nomination? Yes

Page last reviewed June 2022
Page originally created June 2022

Internet Citation: Health Disparities in Epilepsy Care. Content last reviewed June 2022. Effective Health Care Program, Agency for Healthcare Research and Quality, Rockville, MD.

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