Access to Care and Health Disparities Among People with Epilepsy December 7, 2013

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1 Access to Care and Health Disparities Among People with Epilepsy December 7, 2013 David J. Thurman, MD, MPH Emory University American Epilepsy Society Annual Meeting

2 Disclosure UCB, Inc. Grant funding American Epilepsy Society 2013 Annual Meeting

3 Learning Objectives Identify key literature on health care disparities Describe recent U.S. studies addressing health disparities in epilepsy Discuss implications American Epilepsy Society 2013 Annual Meeting

4 Brief Review of Literature Studies of health disparities factors affecting occurrence and outcome: Demographic: Age, Sex, and Ethnicity Socioeconomic Access to health care

5 Systematic Reviews Review Article How common are the common Neurologic disorders? D. Hirtz, MD; D.J. Thurman, MD, MPH; K. Gwinn-Hardy, MD; M. Mohamed, MPH A.R. Chaudhuri, PhD; and R. Zalutsky, PhD NEUROLOGY 2007;68: Epilepsia, 50(10): , 2009 SPECIAL REPORT Disparities in epilepsy: Report of a systematic review by the North American Commission of the International League Against Epilepsy *Jorge G. Burneo, Nathalie Jette, William Theodore, Charles Begley, Karen Parko, **David J. Thurman, and Samuel Wiebe for the Task Force on Disparities in Epilepsy Care, on behalf of the North American Commission of the International League Against Epilepsy

6 Review of Health Disparities in Epilepsy: Incidence by Demographic Attributes Age highest in infants & seniors Sex sl. males, but inconclusive Incidence per Race/ethnicity 20 inconclusive 0 Hirtz D et al. Neurology 2007; 68(5): Burneo JG et al. Epilepsia 2009; 50(10): Incidence by Age Age in Years

7 Review of Health Disparities in Epilepsy: Prevalence by Social Attributes Epilepsy is associated with: Lower income Higher unemployment Lower completion of post-secondary education Burneo JG et al. Epilepsia 2009; 50(10):

8 Review of Health Disparities in Epilepsy: Populations with Reduced Medical Care AED adherence Lower SES No Insurance or Medicaid Non-whites Surgery African Americans Mental health services Lower education, comorbidities Burneo JG et al. Epilepsia 2009; 50(10):

9 Health Disparities: Populations at Risk Racial and ethnic minorities tend to receive a lower quality of healthcare than non-minorities, even when access-related factors, such as patients insurance status and income, are controlled. Institute of Medicine, 2003

10 Access to Health Care, Quality of Care, and Specialty Care Limits To The Safety Net: Teaching Hospital Faculty Report On Their Patients Access To Care Access to certain specialty services and to routine inpatient care is often severly limited, even for insured patients. by Joel S Weissman, Ernest Moy, Eric G. Campbell, Manjusha Gokhale, Recal Yucel, Nancyanne Causino, and David Blumenthal Health Affairs 2003;27(6): Original Paper VISITS TO SPECIALISTS UNDER MEDICARE: SOCIOECONOMIC ADVANTAGE AND ACCESS TO CARE JAN BLUSTEIN, MD, PhD LINDA J. WEISS, PhD Journal of Health Care for the Poor and Underserved Vol. 9, No

11 Unmet Need for Routine and Specialty Care: Data From the National Survey of Children With Special Health Care Needs Michell L. Mayer, PhD, MPH, RN; Asheley Cockrell Skinner, BS; and Rebecca T. Slifkin, PhD Pediatrics 2004; 113(2): Special Article Report of the AAN Task Force on access to health care: The effect of no personal health insurance on health care for people with neurologic disorders Michael P. Earnest, MD; Jill M. Norris, PhD; Mark S Eberhardt, PhD; George H. Sands, MD; and the Task Force on Access to Health care of the American Academy of Neurology NEUROLOGY 1996;46:

12 Access-to-Care Studies: Specialty Care Identify limitations on access to specialty care in the United States Even in populations with some insurance coverage Even in populations with conditions recognized as requiring such care

13 Epilepsia, 50(5): , 2009 Sociodemographic disparities in epilepsy care: Results from the Houston/New York City health care use and outcomes study. Charles E. Begley, Rituparna Basu, Thomas Reynolds, David R. Lairson, Stephanie Dubinsky, Michael Newmark, Forbes Barnwell, Allen Hauser, Dale Hesdorffer, Nora Hernandez, Steven C. Karceski, and Tina Shih

14 The Houston/NYC Health Care Use and Outcomes Study Longitudinal survey of 560 epilepsy clinic attendees in 4 hospitals (NYC & Houston) Represents spectrum of SES, not pop n-based Non-whites compared to whites: Non-specialist visits - odds ratio (OR) 5.3 Specialist visits - OR 0.3 ER visits - OR 3.1 Hospitalization - OR 5.4 Begley CE, et al. Epilepsia 2009; 50(5):

15 The Houston/NYC Health Care Use and Outcomes Study (cont.) Differences related to clinic/hospital Worse in sites serving predominantly lower income populations Site of care more important than individual characteristics Begley CE, et al. Epilepsia 2009; 50(5):

16 Recent CDC studies addressing health disparities in epilepsy

From the National Health Interview Survey U.S. 2010 Adult active epilepsy prevalence is 1%.

17 From the National Health Interview Survey U.S Adult active epilepsy prevalence is 1%. Of these, only 53% have seen neurologist or epilepsy specialist in past year.

18 From the BRFSS U.S., 2005 Behavioral Risk Factor Surveillance System Survey on Epilepsy

19 BRFSS* Design State-based, random-digit-dialed telephone survey Surveys civilian, noninstitutionalized population aged >18 years Core questions used in 50 states Epilepsy questions added in some states in 2005 Screening question in 19 states 3 or 4 follow-up questions in 13 states *Behavioral Risk Factor Surveillance System

20 BRFSS Epilepsy Questions Have you ever been told by a doctor that you have a seizure disorder or epilepsy? Are you currently taking any medicine to control your seizure disorder or epilepsy? How many seizures of any type have you had in the last three months? In the past year have you seen a neurologist or epilepsy specialist for your epilepsy or seizure disorder?

21 BRFSS Categories of Epilepsy Lifetime epilepsy Active epilepsy ever told they had epilepsy AND currently taking AED or had seizure(s) in last 3 months Active epilepsy strata: with recent seizures without recent seizures.

22 BRFSS Results: Epilepsy Prevalence, 2005 Active Epilepsy (n=892) / 1000* Those w/ active epilepsy report: Recent Seizure in 44% No recent Seizure in 56% Source: Behavioral Risk Factor Surveillance System, 13 States, 2005 MMWR 2008; 57(SS-6)

23 Socioeconomic Comparisons: Active Epilepsy vs. No Epilepsy People w/ epilepsy are more likely: Not employed (unemployed or disabled) Odds ratio (O.R.) = 6.2 ( ) Household income <$25,000 O.R. = 3.0 ( ) Education < HS O.R. = 1.5 ( )) BRFSS, See MMWR 2008; 57(SS-6)

24 Distribution of Employment Status within Epilepsy Severity Categories 50% 42% 40% 30% 22% 20% 10% 7.5% 12.9% Unable to Work 0% -Sz +Sz Unemployed BRFSS, See MMWR 2008; 57(SS-6)

25 Distribution of Annual Incomes within Epilepsy Severity Categories 61% 70% 60% 36% 50% 40% 30% 20% 10% 37% 27% 12% 27% <$25K $25K -$49K 0% -Sz +Sz $50K BRFSS, See MMWR 2008; 57(SS-6)

26 Access to Medical Care by Level of Epilepsy Severity Proportion who have not seen neurologist or epilepsy specialist in past year 40% 20% 41% 35% 0% -Sz +Sz BRFSS, See MMWR 2008; 57(SS-6)

27 Specialty Care Treatment Gap U.S. People w/ Epilepsy, 2005 Nearly half (44%) of PWE report recent seizures. One third (35%) of these are not receiving specialty care. Reported Sz, Last 3 mo. None 56% Some 44% BRFSS, See MMWR 2008; 57(SS-6)

28 Access to Medical Care by Level of Epilepsy Severity 25% 24% 20% 17% 15% 10% 15% 5% 8% Couldn't see MD 2 cost 0% -Sz +Sz No Insurance BRFSS, See MMWR 2008; 57(SS-6)

29 Recent Trends in Health Insurance Coverage Uninsurance and Underinsurance Lack of private health insurance rose 27% from (CDC, National Health Interview Survey) Estimated 46 million people uninsured Estimated 25 million people under-insured. Underinsurance rose 60% from (Schoen C et al. Health Affairs, June 10, 2008: w298 w309.)

30 Conclusions Major health disparities exist for PWE compared to the general population PWE, especially those w/o seizure remission, are more likely to have: income, unemployment, & education access to & utilization of health care svcs. access to care greater for minority populations

31 Conclusions (cont.) There is a substantial treatment gap for PWE involving access to specialty care Insurance coverage may not guarantee adequate access to specialty care Epilepsy is an example whose lessons apply to other chronic neurologic disorders.

32 Future Research Needs Distinguish access to epilepsy subspecialty care Health disparities and access to care among children with epilepsy Trends under the Affordable Care Act

33 While research has documented disparities in receiving equitable and timely epilepsy care, the reasons for these inequities... and their magnitude... have to be better understood in order to improve access to care. Institute of Medicine, 2012

34 Medicine, as a social science, as the science of human beings, has the obligation to point out problems and to attempt their theoretical solution: the politician, the practical anthropologist, must find the means for their actual solution. Rudolf Virchow ( )

35 Impact on Clinical Care and Practice Identify and address access-to-care barriers in patients Advocacy

36 References 1. 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): Burneo JG, Jette N, Theodore W, et al. Disparities in epilepsy: Report of a systematic review by the North American Commission of the International League Against Epilepsy. Epilepsia, 50(10): , Centers for Disease Control and Prevention (Kobau R et al.). Epilepsy in adults and access to care United States, MMWR 2012; 61(45): Centers for Disease Control and Prevention (Kobau R et al.). Epilepsy surveillance among adults 19 states: Behavioral Risk Factor Surveillance System, MMWR 2008; 57(SS-6). 5. Earnest MP, Norris JM, Eberhardt MS, et al. Report of the AAN Task Force on Access to Health Care: The effect of no personal health insurance on health care for people with neurologic disorders. Neurology 1996;46: Hirtz D, Thurman DJ, Gwinn-Hardy K, et al. How common are the common neurologic disorders? Neurology 2007;68: Institute of Medicine. Smedley BD, Stith AY, and Nelson AR, Editors. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Washington, D.C., The National Academies Press, Institute of Medicine Committee on the Public Health Dimensions of the Epilepsies. Epilepsy across the Spectrum: Promoting Health and Understanding. Washington, D.C.; The National Academies Press, Mayer ML, Skinner AC, Slifkin RT. Unmet Need for Routine and Specialty Care: Data From the National Survey of Children With Special Health Care Needs. Pediatrics 2004; 113(2): National Center for Health Statistics. Early Release of Selected Estimates Based on Data From the 2009 National Health Interview Survey. Hyattsville, MD: ( 11. Schoen C, Collins SR, Kriss JL, Doty MM. How Many Are Underinsured? Trends Among U.S. Adults, 2003 and 2007, Health Affairs Web Exclusive, June 10, 2008:w298 w309. ( Underinsured--Trends-Among-U-S--Adults and-2007.aspx.)

Epidemiologic Research and Surveillance of the Epilepsies

The Public Health Dimensions of the Epilepsies: Epidemiologic Research and Surveillance of the Epilepsies A Systems-level Perspective David J. Thurman, MD, MPH Centers for Disease Control and Prevention