Epidemiologic, Population, and Health Outcome Studies

Since the late 1990’s, the CDC Epilepsy Program has supported epidemiologic and related research by collecting and analyzing data, funding and providing technical assistance to academic investigators, and collaborating with other programs within CDC and the US Department of Health and Human Services.

See what CDC has funded recently

• Currently Funded Epidemiology Studies
• Stigma Research Projects

What we have learned

Here is a brief summary of what we have learned from the epidemiologic and primary prevention studies supported by the CDC Epilepsy Program since 2001:

• The prevalence of epilepsy varies substantially among different populations in the United States, with estimates ranging from 5.0 to 11.5 cases of active epilepsy per 1000. While the methods of identifying cases varies among these studies, the median estimate is 9.1 cases per thousand. This estimate is nearly 30% higher than a recent estimate of 7.1 per thousand¹ derived from previous studies conducted in Europe and North America.^2-10
• Even mild, non-penetrating civilian injuries are a substantial risk factor for the development of epilepsy (4.4% within 3 years of injury), according to a population-based follow-up study of people who were hospitalized with traumatic brain injury.¹¹ Previous studies had identified an increased risk mainly with severe or penetrating traumatic brain injuries.
• People with epilepsy with low income have lower quality of life and worse health outcomes compared to those with higher incomes, and the prevalence of poverty is higher among people with epilepsy.^7-9,12-14

Tools developed

Several tools that support researchers and health care providers have come from CDC-sponsored research on surveillance methods:

• An algorithm to identify epilepsy cases in some health care data bases with accuracies approaching 90 percent.⁵
• Survey tools for identifying epilepsy in populations.¹⁵
• Surveillance standards recently published by the International League Against Epilepsy.¹⁶
• Assessment tools that examine attitudes toward epilepsy, stigma, and the prevalence of stigma in populations.^17,18
• Quality care indicators and standards for the diagnosis and treatment of people with epilepsy.^19,20

Publications

Selected publications from CDC-supported research.  See more CDC-funded scientific articles.

Chong J. Kudrimoti HS. Lopez DC. Labiner DM. Behavioral risk factors among Arizonans with epilepsy: Behavioral Risk Factor Surveillance System 2005/2006. Epilepsy & Behavior. 2010;17(4):511-9.

Ferguson PL, Smith GM, Wannamaker BB, Thurman DJ, Pickelsimer EE, Selassie AW. A population-based study of risk of epilepsy after hospitalization for traumatic brain injury. Epilepsia. 2010;51(5):891-8.

Perucca P, Jacoby A, Marson AG, Baker GA, Lane S, Benn EK, et al. Adverse antiepileptic drug effects in new-onset seizures: a case-control study. Neurology. 2011;76(3):273-9.

Smith G, Ferguson PL, Saunders LL, Wagner JL, Wannamaker BB, Selassie AW.  Psychosocial factors associated with stigma in adults with epilepsy.  Epilepsy & Behavior. 2009;16(3):484-90.

 

References

1. Hirtz D, Thurman DJ, Gwinn-Hardy K, Mohammed M, Chaudhuri AR, Zalutsky R. How common are the “common” neurological disorders? Neurology. 2007;68(5):326-37.
2. Chong J, Hesdorffer DC, Thurman DJ, et al. The prevalence of epilepsy along the Arizona-Mexico border.Epilepsy Res. 2013;105(1-2):206-15.
3. Faught E, Richman J, Martin R, et al. Incidence and prevalence of epilepsy among older U.S. Medicare beneficiaries. Neurology. 2012;78(7):448-53.
4. Ferguson PL, Chiprich J, Smith G, et al. Prevalence of self-reported epilepsy, health care access, and health behaviors among adults in South Carolina. Epilepsy & Behavior. 2008;13(3):529-34.
5. Holden EW, Grossman E, Nguyen HT, et al. Developing a computer algorithm to identify epilepsy cases in managed care organizations. Disease Management. 2005;8(1):1-14.
6. Kelvin EA, Hesdorffer DC, Bagiella E, et al. Prevalence of self-reported epilepsy in a multiracial and multiethnic community in New York City. Epilepsy Research. 2007;77(2-3):141-50.
7. Kobau R, Zahran H, Thurman DJ, et al. Epilepsy surveillance among adults—19 States, Behavioral Risk Factor Surveillance System, 2005. MMWR. 2008;57(SS-6):1–24.
8. Kobau R, Luo Y-H, Zack MM, Helmers S, Thurman DJ. Epilepsy in adults and access to care—United States, 2010. MMWR. 2012;61(45);909-13.
9. Kroner BL, Fahimi M, Kenyon A, Thurman DJ, Gaillard WD. Racial and socioeconomic disparities in epilepsy in the District of Columbia.  Epilepsy Res. 2012;103(2-3):279-87.
10. Parko K, Thurman DJ. Prevalence of epilepsy and seizures in the Navajo Nation 1998-2002. Epilepsia. 2009;50(10):2180-5.
11. Ferguson PL, Smith GM, Wannamaker BB, Thurman DJ, Pickelsimer EE, Selassie AW. A population-based study of risk of epilepsy after hospitalization for traumatic brain injury. Epilepsia. 2010;51(5):891-8.
12. Begley CE, Basu R, Reynolds T, et al.  Sociodemographic disparities in epilepsy care: Results from the Houston/New York City health care use and outcomes study. Epilepsia. 2009;50(5):1040-50.
13. Begley C, Basu R, Lairson D, et al. Socioeconomic status, health care use, and outcomes: persistence of disparities over time. Epilepsia. 2011; 52(5):957-64.
14. Thompson AW, Kobau R, Park R, Grant D. Epilepsy care and mental health care for people with epilepsy: California Health Interview Survey, 2005. Preventing Chronic Disease. 2012;9:E60.
15. Brooks DR, Avetisyan R, Jarrett KM, et al. Validation of self-reported epilepsy for purposes of community surveillance. Epilepsy & Behavior. 2012;23(1):57-63.
16. Thurman DJ, Beghi E, Berg AT, et al. Standards for epidemiologic studies and surveillance of epilepsy. Epilepsia. 2011;52 (Suppl 7):2-26.
17. DiIorio CA, Kobau R, Holden EW, et al. Developing a measure to assess attitudes toward epilepsy in the US population. Epilepsy & Behavior. 2004;5(6):965-75.
18. Kobau R, DiIorio CA, Anderson LA, Price PH. Further validation and reliability testing of the Attitudes and Beliefs about Living with Epilepsy (ABLE) components of the CDC Epilepsy Program instrument on stigma. Epilepsy Behav 2006;8(3):552–559. Epub 2006. abstract
19. Pugh MJ, Berlowitz DR, Montouris G, et al. What constitutes high quality of care for adults with epilepsy? Neurology. 2007;69(21):2020-7.
20. Caplin DA, Rao JK, Filloux F, Bale JF, van Orman C. Development of performance indicators for the primary care management of pediatric epilepsy: expert consensus recommendations based on the available evidence. Epilepsia. 2006;47:2011-2019.