Advertisement

Racial/ethnic disparities in the treatment of epilepsy: What do we know? What do we need to know?

      Abstract

      We examine current understanding of the minority disadvantage in the clinical management of epilepsy. We performed an online literature search using several keywords (race, ethnicity, epilepsy, treatment, and quality of life) and identified additional literature through cross-referencing/manual search. The search produced 58 items published between 1977 and 2005. Of 49 original research studies, 38 were quantitative, 7 were qualitative, and 4 used mixed methods. Three or more articles were published in Epilepsia, Epilepsy & Behavior, Epilepsy Research, Neurology, and Seizure. Research concerning racial/ethnic differences in epilepsy treatment is scarce and limited by methodology, but suggests underutilization of state-of-the-art therapies by minorities. Racial/ethnic minorities also appear to have limited knowledge about epilepsy and its treatment, experience barriers to care, lack social support, and seek alternative therapies for epilepsy. We propose a framework to identify the array of disparities, points of intervention, and interventions.

      Keywords

      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'

      Subscribe:

      Subscribe to Epilepsy & Behavior
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect

      References

      1. Centers for Disease Control and Prevention. Epilepsy: increasing awareness and improving care [Online]. 2002 [cited 2004 Feb 19]. Available from: URL:<www.cdc.gov/nccdphp/bb_epilepsy>.

        • Theodore W.H.
        Health disparities in epilepsy.
        AES News. 2003; (Summer)
      2. National Institute of Neurological Disorders and Stroke. Health Disparities in Epilepsy Planning Panel [Online]. 2002 [cited 2004 Feb 19]. Available from: URL:<www.ninds.nih.gov/news_and_events/epilepsy_panel_2002.htm>.

        • Fletcher-Janzen E.
        Multicultural perspectives on the neuropsychological assessment and treatment of epilepsy.
        in: Fletcher-Janzen E. Strickland T.L. Reynolds C.R. Handbook of cross-cultural neuropsychology. Kluwer Academic/Plenum, New York2000: 185-203
        • Hauser W.A.
        • Hesdorffer D.C.
        Epilepsy: frequency, causes and consequences.
        Demos Press, New York1990
        • Hauser W.A.
        • Nelson K.B.
        Epidemiology of epilepsy in children.
        Cleve Clin J Med. 1989; 56: S185-S194
        • Hauser W.A.
        • Annegers J.F.
        • Kurland L.T.
        Incidence of epilepsy and unprovoked seizures in Rochester, Minnesota: 1935–1984.
        Epilepsia. 1993; 34: 453-468
        • Shamansky S.L.
        • Glaser G.H.
        Socioeconomic characteristics of childhood seizure disorders in the New Haven area: an epidemiologic study.
        Epilepsia. 1979; 20: 457-474
        • Locke G.E.
        • Lampert D.
        • Hauser W.A.
        • et al.
        Prevalence of epilepsy and seizure disorders in an urban minority population: a feasibility study.
        Epilepsia. 1989; 30: 747-755
        • Annegers J.F.
        • Dubinsky S.
        • Coan S.P.
        • Newmark M.E.
        • Roht L.
        The incidence of epilepsy and unprovoked seizures in multiethnic, urban health maintenance organizations.
        Epilepsia. 1999; 40: 502-506
        • Hauser W.A.
        Incidence and prevalence.
        in: Engel J. Pedley T.A. Epilepsy: a comprehensive textbook. Lippincott-Raven, Philadelphia1998: 47-58
      3. Centers for Disease Control and Prevention. Prevalence of self-reported epilepsy—United States, 1986–1990. MMWR Morb Mortal Wkly Rep 1994;43:810–1, 817–8.

        • Levy J.E.
        • Neutra R.
        • Parker D.
        Life careers of Navajo epileptics and convulsive hysterics.
        Soc Sci Med [Med Anthropol]. 1979; 13B: 53-66
        • Levy J.E.
        • Neutra R.
        • Parker D.
        Hand trembling, frenzy witchcraft, and moth madness: a study of Navajo seizure disorders.
        University of Arizona Press, Tucson, AZ1987
        • Holden E.W.
        • Thanh Nguyen H.
        • Grossman E.
        • et al.
        Estimating prevalence, incidence, and disease-related mortality for patients with epilepsy in managed care organizations.
        Epilepsia. 2005; 46: 311-319
        • DeLorenzo R.J.
        • Hauser W.A.
        • Towne A.R.
        • et al.
        A prospective, population-based epidemiologic study of status epilepticus in Richmond, Virginia.
        Neurology. 1996; 46: 1029-1035
        • DeLorenzo R.J.
        • Pellock J.M.
        • Towne A.R.
        • Boggs J.G.
        Epidemiology of status epilepticus.
        J Clin Neurophysiol. 1995; 12: 316-325
        • Sacco R.L.
        • Boden-Albala B.
        • Abel G.
        • et al.
        Race–ethnic disparities in the impact of stroke risk factors: the northern Manhattan stroke study.
        Stroke. 2001; 32: 1725-1731
        • Dunlop D.D.
        • Song J.
        • Lyons J.S.
        • Manheim L.M.
        • Chang R.W.
        Racial/ethnic differences in rates of depression among preretirement adults.
        Am J Public Health. 2003; 93: 1945-1952
        • Strine T.W.
        • Kobau R.
        • Chapman D.P.
        • et al.
        Psychological distress, comorbidities, and health behaviors among U.S. adults with seizures: results from the 2002 National Health Interview Survey.
        Epilepsia. 2005; 46: 1133-1139
      4. Institute of Medicine. Access to health care in America. Washington, DC: National Academy Press; 1993.

        • Asch S.M.
        • Kerr E.A.
        • Keesey J.
        • et al.
        Who is at greatest risk for receiving poor-quality health care?.
        N Engl J Med. 2006; 354: 1147-1156
        • Chin S.-Y.
        This, that, and the other: managing illness in a first-generation Korean-American family.
        West J Med. 1992; 157: 305-309
      5. Centers for Disease Control and Prevention. Hospitalization for epilepsy—United States, 1988–1992. MMWR Morb Mortal Wkly Rep 1995; 44:818–21.

        • Begley C.E.
        • Lairson D.R.
        • Reynolds T.F.
        • Coan S.
        Early treatment cost in epilepsy and how it varies with seizure type and frequency.
        Epilepsy Res. 2001; 47: 205-215
        • Penberthy L.T.
        • Towne A.
        • Garnett L.K.
        • Perlin J.B.
        • DeLorenzo R.J.
        Estimating the economic burden of status epilepticus to the health care system.
        Seizure. 2005; 14: 46-51
        • Cooper W.O.
        • Federspiel C.F.
        • Griffin M.R.
        • Hickson G.B.
        New use of anticonvulsant medications among children enrolled in the Tennessee Medicaid Program.
        Arch Pediatr Adolesc Med. 1997; 151: 1242-1246
        • Krumholz A.
        • Grufferman S.
        • Orr S.T.
        • Stern B.J.
        Seizures and seizure care in an emergency department.
        Epilepsia. 1989; 30: 175-181
        • Pollack H.A.
        • Dombkowski K.J.
        • Zimmerman J.B.
        • et al.
        Emergency department use among Michigan children with special health care needs: an introductory study.
        Health Serv Res. 2004; 39: 665-692
        • Snodgrass S.R.
        • Vedanarayanan V.V.
        • Parker C.C.
        • Parks B.R.
        Pediatric patients with undetectable anticonvulsant blood levels: comparison with compliant patients.
        J Child Neurol. 2001; 16: 164-168
        • Gadow K.D.
        • Kalachnik J.
        Prevalence and pattern of drug treatment for behavior and seizure disorders of TMR students.
        Am J Ment Defic. 1981; 85: 588-595
      6. Serge PLJC. Epilepsy in a large urban public hospital in the Midwest. In: Poster Session at American Epilepsy Society Annual Meeting, San Francisco, CA; 1996.

        • Mitchell W.G.
        • Scheier L.M.
        • Baker S.A.
        Adherence to treatment in children with epilepsy: who follows “doctor’s orders”?.
        Epilepsia. 2000; 41: 1616-1625
        • Debruyn L.M.
        Tewa children who have epilepsy: a health care dilemma.
        Am Indian Alsk Native Ment Health Res. 1990; 4: 25-41
        • Berg A.T.
        • Vickrey B.G.
        • Langfitt J.T.
        • et al.
        The multicenter study of epilepsy surgery: recruitment and selection for surgery.
        Epilepsia. 2003; 44: 1425-1433
        • Burneo J.
        • Black R.
        • Knowlton R.
        • et al.
        Racial disparities in the use of surgical treatment for intractable temporal lobe epilepsy.
        Neurology. 2005; 64: 50-54
        • Lawn N.
        • Laich E.
        • Ho S.
        • et al.
        Eclampsia, hippocampal sclerosis, and temporal lobe epilepsy: accident or association?.
        Neurology. 2004; 62: 1352-1356
        • Burneo J.G.
        • Knowlton R.C.
        • Martin R.
        • Faught R.E.
        • Kuzniecky R.I.
        Race/ethnicity: a predictor of temporal lobe epilepsy surgery outcome?.
        Epilepsy Behav. 2005; 7: 486-490
        • Hussein Z.
        • Posner J.
        Population pharmacokinetics of lamotrigine monotherapy in patients with epilepsy: retrospective analysis of routine monitoring data.
        Br J Clin Pharmacol. 1997; 43: 457-465
        • Miller R.
        • Frame B.
        • Corrigan B.
        • et al.
        Exposure–response analysis of pregabalin add-on treatment of patients with refractory partial seizures.
        Clin Pharmacol Ther. 2003; 73: 491-505
        • Fischer J.H.
        • Patel T.V.
        • Fischer P.A.
        Fosphenytoin: clinical pharmacokinetics and comparative advantages in the acute treatment of seizures.
        Clin Pharmacokinet. 2003; 42: 33-58
        • Eldon M.A.
        Clinical pharmacokinetics of fosphenytoin: an overview.
        Neurologist. 1998; 4: S23-S29
        • Grasela T.H.
        • Fiedler-Kelly J.
        • Cox E.
        • et al.
        Population pharmacokinetics of lamotrigine adjunctive therapy in adults with epilepsy.
        J Clin Pharmacol. 1999; 39: 373-384
        • Ouellet D.
        • Bockbrader H.N.
        • Wesche D.L.
        • Shapiro D.Y.
        • Garofalo E.
        Population pharmacokinetics of gabapentin in infants and children.
        Epilepsy Res. 2001; 47: 229-241
        • Watanabe M.
        • Iwahashi K.
        • Kugoh T.
        • Suwaki H.
        The relationship between phenytoin pharmacokinetics and the CYP2C19 genotype in Japanese epileptic patients.
        Clin Neuropharmacol. 1998; 21: 122-126
        • Dhanak M.
        Racial differences in leukocyte counts.
        Am J Psychiatry. 1996; 153: 586-587
        • Tohen M.
        • Castillo J.
        • Baldessarini R.J.
        • Zarate Jr., C.
        • Kando J.C.
        Blood dyscrasias with carbamazepine and valproate: a pharmacoepidemiological study of 2228 patients at risk.
        Am J Psychiatry. 1995; 152: 413-418
        • Burneo J.G.
        • Martin R.
        Reporting race/ethnicity in epilepsy clinical trials.
        Epilepsy Behav. 2004; 5: 743-745
        • Ottman R.
        • Berenson K.
        • Barker-Cummings C.
        Recruitment of families for genetic studies of epilepsy.
        Epilepsia. 2005; 46: 290-297
        • Chandra V.
        • Bharucha N.E.
        • Schoenberg B.S.
        Deaths related to epilepsy in the United States.
        Neuroepidemiology. 1983; 2: 148-155
        • DeLorenzo R.J.
        • Towne A.R.
        • Pellock J.M.
        • Ko D.
        Status epilepticus in children, adults, and the elderly.
        Epilepsia. 1992; 33: S15-S25
        • Towne A.R.
        • Pellock J.M.
        • Ko D.
        • DeLorenzo R.J.
        Determinants of mortality in status epilepticus.
        Epilepsia. 1994; 35: 27-34
        • Yerby M.
        • Koepsell T.
        • Daling J.
        Pregnancy complications and outcomes in a cohort of women with epilepsy.
        Epilepsia. 1985; 26: 631-635
        • Cramer J.A.
        • Perrine K.
        • Devinsky O.
        • et al.
        Development and cross-cultural translations of a 31-item quality of life in epilepsy inventory.
        Epilepsia. 1998; 39: 81-88
        • Chaplin J.E.
        • Malmgren K.
        Cross-cultural adaptation and use of the Epilepsy Psychosocial Effects Scale: comparison between the psychosocial effects of chronic epilepsy in Sweden and the United Kingdom.
        Epilepsia. 1999; 40: 93-96
        • Trostle J.A.
        • Hauser W.A.
        • Sharbrough F.W.
        Psychologic and social adjustment to epilepsy in Rochester, Minnesota.
        Neurology. 1989; 39: 633-637
        • Elixhauser A.
        • Leidy N.K.
        • Meador K.
        • Means E.
        • Willian M.K.
        The relationship between memory performance, perceived cognitive function, and mood in patients with epilepsy.
        Epilepsy Res. 1999; 37: 13-24
        • Dilorio C.
        • Osborne Shafer P.
        • Letz R.
        • et al.
        The association of stigma with self-management and perceptions of health care among adults with epilepsy.
        Epilepsy Behav. 2003; 4: 259-267
        • Austin J.K.
        • Dunn D.W.
        • Caffrey H.M.
        • et al.
        Recurrent seizures and behavior problems in children with first recognized seizures: a prospective study.
        Epilepsia. 2002; 43: 1564-1573
        • Neugebauer R.
        • Paik M.
        • Hauser W.A.
        • et al.
        Stressful life events and seizure frequency in patients with epilepsy.
        Epilepsia. 1994; 35: 336-343
        • Gehlert S.
        • DiFrancesco A.
        • Chang C.H.
        Black–white differences in the psychosocial outcomes of epilepsy.
        Epilepsy Res. 2000; 42: 63-73
        • Williams J.
        • Steel C.
        • Sharp G.B.
        • et al.
        Anxiety in children with epilepsy.
        Epilepsy Behav. 2003; 4: 729-732
        • Neutra R.
        • Levy J.E.
        • Parker D.
        Cultural expectations versus reality in Navajo seizure patterns and sick roles.
        Culture Med Psychiatry. 1977; 1: 225-275
        • Levy J.E.
        Psychological and social problems in epileptic children in four southwestern Indian tribes.
        J Community Psychol. 1987; 15: 307-315
        • Baker G.A.
        • Jacoby A.
        • Gorry J.
        • Doughty J.
        • Ellina V.
        Quality of life of people with epilepsy in Iran, the Gulf, and Near East.
        Epilepsia. 2005; 46: 132-140
        • Paschal A.M.
        • Ablah E.
        • Wetta-Hall R.
        • Molgaard C.A.
        • Liow K.
        Stigma and safe havens: a medical sociological perspective on African-American female epilepsy patients.
        Epilepsy Behav. 2005; 7: 106-115
        • Swarztrauber K.
        • Dewar S.
        • Engel Jr., J.
        Patient attitudes about treatments for intractable epilepsy.
        Epilepsy Behav. 2003; 4: 19-25
        • Griggs J.J.
        • Engel J.
        Epilepsy surgery and the racial divide.
        Neurology. 2005; 64: 8-9
        • Meinardi H.
        • Scott R.A.
        • Reis R.
        • Sander J.W.
        The treatment gap in epilepsy: the current situation and ways forward.
        Epilepsia. 2001; 42: 136-149
      7. Levy JE. Epilepsy in the Tuba City and Keams Canyon Service Units. Indian Health Service: a report prepared for the Indian Children’s Program. USPHS, IHS; 1981.

        • Sirven J.I.
        • Lopez R.A.
        • Vazquez B.
        • Van Haverbeke P.
        Que es la Epilepsia? Attitudes and knowledge of epilepsy by Spanish-speaking adults in the United States.
        Epilepsy Behav. 2005; 7: 259-265
        • Fadiman A.
        “The spirit catches you and you fall down”: epilepsy and the Hmong.
        Epilepsy Behav. 2000; 1: S3-S8
        • Ismail H.
        • Wright J.
        • Rhodes P.
        • Small N.
        Religious beliefs about causes and treatment of epilepsy.
        Br J Gen Pract. 2005; 55: 26-31
        • Ismail H.
        • Wright J.
        • Rhodes P.
        • Small N.
        • Jacoby A.
        South Asians and epilepsy: exploring health experiences, needs and beliefs of communities in the north of England.
        Seizure. 2005; 14: 497-503
        • Wright J.
        • Pickard N.
        • Whitfield A.
        • Hakin N.
        A population-based study of the prevalence, clinical characteristics and effect of ethnicity in epilepsy.
        Seizure. 2000; 9: 309-313
        • Lim S.H.
        • Pan A.
        Knowledge, attitudes, and perceptions of epilepsy in Asia: toward a uniform study protocol.
        Epilepsia. 2005; 46: 48-49
        • Jang Y.
        • Kim G.
        • Chiriboga D.A.
        Health, healthcare utilization, and satisfaction with service: barriers and facilitators for older Korean Americans.
        J Am Geriatr Soc. 2005; 53: 1613-1617
        • Conrad M.M.
        • Pacquiao D.F.
        Manifestation, attribution, and coping with depression among Asian Indians from the perspectives of health care practitioners.
        J Transcult Nurs. 2005; 16: 32-40
        • Devlieger P.
        • Piachaud J.
        • Leung P.
        • George N.
        Coping with epilepsy in Zimbabwe and the Midwest, USA.
        Int J Rehabil Res. 1994; 17: 251-264
        • Nubukpo P.
        • Preux P.M.
        • Clement J.P.
        • et al.
        Comparison of sociocultural attitudes towards epilepsy in Limousin (France), in Togo and in Benin (Africa).
        Med Trop (Mars). 2003; 63: 143-150
        • Hills M.D.
        • MacKenzie H.C.
        New Zealand community attitudes toward people with epilepsy.
        Epilepsia. 2002; 43: 1583-1589
        • Carrazana E.
        • DeToledo J.
        • Tatum W.
        • et al.
        Epilepsy and religious experiences: Voodoo possession.
        Epilepsia. 1999; 40: 239-241
        • Langfitt J.
        • Meador K.
        Want to improve epilepsy care? Ask the patient.
        Neurology. 2004; 62: 6-7
      8. Padrez R, Carino T, Blum J, Mendelson D. The use of Oregon’s evidence-based reviews for Medicaid Pharmacy Policies: experiences in four states. Health Strategies Consultancy LLC, Kaiser Commission on Medicaid and the Uninsured; 2005.

        • Radhakrishnan K.
        • Menon G.
        Surgical treatment of medically refractory epilepsy.
        Curr Sci. 2002; 82: 707-719
        • Kwan P.
        • Brodie M.J.
        Early identification of refractory epilepsy.
        N Engl J Med. 2000; 342: 314-319
        • Devinsky O.
        • Vickrey B.G.
        • Cramer J.
        • et al.
        Development of the quality of life in epilepsy inventory.
        Epilepsia. 1995; 36: 1089-1104
        • Wiebe S.
        • Blume W.T.
        • Girvin J.P.
        • Eliasziw M.
        A randomized, controlled trial of surgery for temporal-lobe epilepsy.
        N Engl J Med. 2001; 345: 311-318
        • French J.A.
        • Kanner A.M.
        • Bautista J.
        • et al.
        Efficacy and tolerability of the new antiepileptic drugs: I. Treatment of new-onset epilepsy: report of the TTA and QSS subcommittees of the American Academy of Neurology and the American Epilepsy Society.
        Epilepsia. 2004; 45: 401-409
        • Langfitt J.T.
        • Bronstein K.
        Use of surgical procedures in the treatment of epilepsy: intervention and outcomes.
        Dis Manag. 1999; 5: 23-40
        • Aday L.A.
        • Awe W.C.
        Health services utilization models.
        in: Gochman D.S. Handbook of health behavior research: I. Personal and social determinants. Plenum, New York1997
        • Van Ryn M.
        Research on the provider contribution to race/ethnicity disparities in medical care.
        Med Care. 2002; 40: I-140-I-151
        • Van Ryn M.
        • Fu S.S.
        Paved with good intentions: do public health and human service providers contribute to racial/ethnic disparities in health?.
        Am J Public Health. 2003; 93: 248-255