22
Review Racial/ethnic disparities in the treatment of epilepsy: What do we know? What do we need to know? Magdalena Szaflarski a,b, * , Jerzy P. Szaflarski c,d , Michael D. Privitera c,d , David M. Ficker c,d , Ronnie D. Horner a,c a Institute for the Study of Health, University of Cincinnati, Cincinnati, OH, USA b Department of Family Medicine, University of Cincinnati, Cincinnati, OH, USA c Department of Neurology, University of Cincinnati, Cincinnati, OH, USA d The Neuroscience Institute, Cincinnati, OH, USA Received 5 April 2006; revised 12 May 2006; accepted 26 May 2006 Available online 12 July 2006 Abstract We examine current understanding of the minority disadvantage in the clinical management of epilepsy. We performed an online lit- erature 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 lim- ited knowledge about epilepsy and its treatment, experience barriers to care, lack social support, and seek alternative therapies for epi- lepsy. We propose a framework to identify the array of disparities, points of intervention, and interventions. Published by Elsevier Inc. Keywords: Epilepsy; Race; Ethnicity; Disparities; Treatment; Health care; Quality of life; Complementary and alternative medicine; Stigma 1. Introduction Racial/ethnic minority populations bear a dispropor- tionate burden of epilepsy, a condition that affects approx- imately 2.5 million people in the United States [1–4]. The rate of epilepsy derived from clinically based studies is reported to be 1.3–2.2 times greater for nonwhite than for white males and 1.4–1.7 times greater for nonwhite than for white females [5]. Although there is little evidence of racial/ethnic differences in the rates of childhood epilepsy or in the incidence of epilepsy when all ages are considered [5–10], prevalence rates are considerably higher in blacks than in either whites or Hispanics for those aged 20–59 [11,12]. Native Americans [13,14] and some Hispanic groups (e.g., elderly Hispanic men) [15] also are reported to have a higher prevalence of epilepsy than their white or non-Hispanic counterparts. In addition, nonwhite indi- viduals have a higher incidence of status epilepticus across all age groups [16,17], and they have higher rates of the well-known risk factors for epilepsy such as diabetes, stroke, and depression [18,19]. Socioeconomic factors, and not biological/genetic differences, appear to be mostly responsible for the racial/ethnic disparities in the occur- rence of epilepsy [8,20]. Despite the inordinate burden of disease among minor- ity populations, the clinical management of epilepsy, including response to therapies within these populations, is poorly understood, potentially impeding the provision of the highest quality of care to all patients afflicted with epilepsy. It is now well-documented that disparities exist broadly in the health care system, particularly in the use of expensive, invasive procedures [21]. A more recent 1525-5050/$ - see front matter Published by Elsevier Inc. doi:10.1016/j.yebeh.2006.05.011 * Corresponding author. Fax: +1 513 558 2744. E-mail address: magdalena.szafl[email protected] (M. Szaflarski). www.elsevier.com/locate/yebeh Epilepsy & Behavior 9 (2006) 243–264

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

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Page 1: Racial/ethnic disparities in the treatment of epilepsy: What do we know? What do we need to know?

www.elsevier.com/locate/yebeh

Epilepsy & Behavior 9 (2006) 243–264

Review

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

Magdalena Szaflarski a,b,*, Jerzy P. Szaflarski c,d, Michael D. Privitera c,d,David M. Ficker c,d, Ronnie D. Horner a,c

a Institute for the Study of Health, University of Cincinnati, Cincinnati, OH, USAb Department of Family Medicine, University of Cincinnati, Cincinnati, OH, USA

c Department of Neurology, University of Cincinnati, Cincinnati, OH, USAd The Neuroscience Institute, Cincinnati, OH, USA

Received 5 April 2006; revised 12 May 2006; accepted 26 May 2006Available online 12 July 2006

Abstract

We examine current understanding of the minority disadvantage in the clinical management of epilepsy. We performed an online lit-erature search using several keywords (race, ethnicity, epilepsy, treatment, and quality of life) and identified additional literature throughcross-referencing/manual search. The search produced 58 items published between 1977 and 2005. Of 49 original research studies, 38were 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 bymethodology, but suggests underutilization of state-of-the-art therapies by minorities. Racial/ethnic minorities also appear to have lim-ited knowledge about epilepsy and its treatment, experience barriers to care, lack social support, and seek alternative therapies for epi-lepsy. We propose a framework to identify the array of disparities, points of intervention, and interventions.Published by Elsevier Inc.

Keywords: Epilepsy; Race; Ethnicity; Disparities; Treatment; Health care; Quality of life; Complementary and alternative medicine; Stigma

1. Introduction

Racial/ethnic minority populations bear a dispropor-tionate burden of epilepsy, a condition that affects approx-imately 2.5 million people in the United States [1–4]. Therate of epilepsy derived from clinically based studies isreported to be 1.3–2.2 times greater for nonwhite thanfor white males and 1.4–1.7 times greater for nonwhite thanfor white females [5]. Although there is little evidence ofracial/ethnic differences in the rates of childhood epilepsyor in the incidence of epilepsy when all ages are considered[5–10], prevalence rates are considerably higher in blacksthan in either whites or Hispanics for those aged 20–59[11,12]. Native Americans [13,14] and some Hispanic

1525-5050/$ - see front matter Published by Elsevier Inc.

doi:10.1016/j.yebeh.2006.05.011

* Corresponding author. Fax: +1 513 558 2744.E-mail address: [email protected] (M. Szaflarski).

groups (e.g., elderly Hispanic men) [15] also are reportedto have a higher prevalence of epilepsy than their whiteor non-Hispanic counterparts. In addition, nonwhite indi-viduals have a higher incidence of status epilepticus acrossall age groups [16,17], and they have higher rates of thewell-known risk factors for epilepsy such as diabetes,stroke, and depression [18,19]. Socioeconomic factors,and not biological/genetic differences, appear to be mostlyresponsible for the racial/ethnic disparities in the occur-rence of epilepsy [8,20].

Despite the inordinate burden of disease among minor-ity populations, the clinical management of epilepsy,including response to therapies within these populations,is poorly understood, potentially impeding the provisionof the highest quality of care to all patients afflicted withepilepsy. It is now well-documented that disparities existbroadly in the health care system, particularly in the useof expensive, invasive procedures [21]. A more recent

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Fig. 1. Number of new publications involving race/ethnicity, by timeperiod. Total N = 58.

244 M. Szaflarski et al. / Epilepsy & Behavior 9 (2006) 243–264

report, though, highlights the nuances to disparities, docu-menting that disparities in health care quality vary withcare type (acute, chronic, and preventive) and function(screening, diagnosis, treatment, and follow-up) [22]. It isbecoming clear that disparities may manifest differentlyfor each condition or disease. Consequently, there needto be targeted studies within a condition to determinewhether disparities exist, where in the spectrum of clinicalmanagement, and the explanations for the disparities.The necessity for intervention and the types of interventionare derived from this information.

Since the most recent review of race/ethnicity and thetreatment of epilepsy in 2000 [4], new areas of racial/ethnicdisparities in epilepsy management have been identified(e.g., epilepsy surgery). It is, therefore, important to revisitthe topic to provide an up-to-date, comprehensive reviewof the literature. In this report, we examine current under-standing of the nature and the extent of the minority disad-vantage in the clinical management of epilepsy through asystematic review of the literature. We also propose aframework for the systematic identification and preven-tion/intervention of disparities in the treatment of epilepsy.

2. Methods

2.1. Search strategy

We performed a literature search using the following databases: Pub-Med, Scopus, SUMSearch, Wiley InterScience/Cochrane, AcademicSearch Premier, Health Source: Nursing/Academic Edition, Psychologyand Behavioral Sciences Collection, ProQuest Nursing Journals, andPsyc-INFO. We began the search using the keyword combination ‘‘(raceOR ethnicity) AND epilepsy AND (treatment OR quality of life).’’ Basedon the sparse results, we expanded the search to include any literaturereferring to race and/or ethnicity in epilepsy, by using the term ‘‘(raceOR ethnicity) AND epilepsy.’’ For confirmation, and for efficiency insome databases, we also ran multiple searches using simple word combina-tions (e.g., race AND epilepsy, ethnicity AND epilepsy).

In addition to the computer-assisted literature search, we identifiedother eligible literature through cross-referencing within the identifiedreports and manual search of relevant documents and personal databases.For example, we reviewed the reference lists and bibliographies of sourcesidentified through the computer-based search. We also used articles andother items on the topic that we had been collecting since 2003 throughregular review of neurology literature, professional interactions (e.g., con-ferences), and ad hoc literature searches.

2.2. Selection criteria

We included in the review those publications and unpublished studiesreferenced in published sources that focused on epilepsy and discussed ornoted race and/or ethnicity. We included both peer-reviewed and non-peer-reviewed items, as well as items published in print and online. Ourgoal was to collect as much as possible of the available scientific informa-tion on the topic. We excluded reviews of racial/ethnic differences in prev-alence or incidence because such reports exist elsewhere and continue to berelevant [4,5,11]. We also excluded the following: medical case reports(e.g., where the only racial or ethnic element was patient’s race/ethnicity);genetic, imaging, or basic pharmacological studies (except where racial/ethnic differences in response to treatment were investigated); and for-eign-country reports that did not focus on racial and/or ethnic, cross-re-gional, or cross-cultural differences (e.g., a country-specific study of thehealth care system for epilepsy care without references to other countries,

populations, or health care systems). Because our interest was in the situ-ation within the United States, we used non-U.S. literature in this reviewas supplemental, providing some additional information to complete gapsin the United States-based knowledge.

2.3. Summary of the search

A full summary of the literature search is presented in the Appendix A.Fifty-eight items met the inclusion/exclusion criteria for the review. Ourreview contains one case report because of its unique focus on epilepsytreatment and ethnicity [23], which we used in conjunction with other, sys-tematic studies. Research studies were evaluated in terms of their researchquestions, methods, and findings in regard to race and/or ethnicity.

The 58 items comprise 55 journal articles (including three editorials orcommentaries), one book, one book chapter, and one conference poster.The publication dates range from 1977 to 2005, with 33 (57%) items pub-lished since 2000. Fig. 1 illustrates the dramatic increase in the number ofnew publications on the topic over time. Among the 55 journal publica-tions, 16 (29%) articles were published in Epilepsia and eight (15%) articleswere published in Epilepsy & Behavior. Epilepsy Research and Neurology

each published four articles; three articles were published in Seizure. Singlearticles appeared in other journals (e.g., Neuroepidemiology, Morbidity

Mortality Weekly Report, Social Science & Medicine, American Indian

and Alaska Native Mental Health Research, etc.). The articles addressedone or more aspects of epilepsy care: treatment (32 articles), patterns ofcare (20 articles), outcomes (23 articles), psychosocial issues (26 articles).Of 49 original research studies, 38 (78%) were quantitative, 7 (14%) werequalitative, and 4 (8%) used mixed methods (quantitative/qualitative); 8(16%) studies focused on children.

3. Results

3.1. Disparities in clinical management

The evidence on disparities in the clinical management ofepilepsy is sparse and focused largely on racial or ethnicpopulations as opposed to other disadvantaged populationsas defined by socioeconomic status, residence, or othercharacteristics (Table 1). Overall, rates of hospitalizationfor epilepsy between 1988 and 1992 were lower for whitesthan for all other racial groups combined (35 vs 51 per100,000) [24]. Age-specific rates were similar for the youn-gest age group, but rates were higher for nonwhites in otherage groups (Fig. 2). Also, epilepsy-related health care costsover 4 years appear to be higher for whites than blacksbased on two population-based incidence samples,although the difference is not statistically significant [25].However, health care costs related to status epilepticus are

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Table 1Racial and/or ethnic disparities in the clinical management of epilepsy

Study (year) Population Aspect of care or clinicalmanagement

Findings

Patterns of care

Krumholtz et al. (1989) [28] Emergency department seizurevisits (N = 200)

Source/type of care, AED use Seventy-nine percent of patients wereblack. Many had no regular source ofcare and lacked insurance/had publicinsurance. Only 14% were receivingAEDs, 57% had subtherapeutic AEDblood levels.

Debruyn (1990) [34] American Indian (Tewa) families(N = 28) with children withepilepsy (N = 31), patients inIndian Health Service (IHS)

Patterns of epilepsy care IHS was used extensively. Outsideservices were sought in complex cases.Emergency services were soughtpromptly. Complementary therapies werenot discussed with Western providers.

Centers for Disease Controland Prevention (1995) [24]

Nationally representativeepilepsy-related inpatient records

Hospitalizations for epilepsy Age-adjusted rates were lower for whitesthan for all other racial groups combined(35 vs 51 per 100,000). Age-specific rateswere similar for children aged 0–14, butrates were higher in other age groups forthe nonwhites.

Serge (1996) [32] Urban hospital patients withepilepsy (N = 300)

Hospitalizations for epilepsy,compliance to treatment

Eighty-five percent of the patients wereAfrican-American or Hispanic. The mostcommon etiology of epilepsy for African-Americans was head trauma, and forHispanics, neurocysticercosis. Substanceabuse, language barriers, andnoncompliance were the most commonreasons for poor outcome. The studysuggests that these epilepsies were largelypreventable and cultural in asocioeconomic sense.

Mitchell et al. (2000) [33] Children with epilepsy aged 4–13(N = 119) recruited for alongitudinal study from anethnically diverse epilepsy clinic

Health care and visit adherencepatterns

Forty-five percent of families spokelanguages other than English as a primarylanguage (mostly Spanish; also, Korean,Chinese, and Armenian). Non-English-speaking families and recent immigrantswere more likely to keep appointmentsand avoid unscheduled contacts withphysicians or medical staff. Higheracculturative risk was associated withlower seizure severity, probably due toreferral patterns. Higher-income,nonminority families were more likely tohave been referred after beginningtreatment elsewhere, whereas minority,low-income families were more likely tobegin treatment in the epilepsy clinic or inthe emergency department.

Begley et al. (2001) [25] Incident cases of unprovokedseizures and epilepsy (N = 500)

Epilepsy care cost (early treatment) No statistically significant racial/ethnicdifferences were observed, but the costwas lower for nonwhite vs white patients.

Pollack et al. (2004) [29] Michigan children duallyenrolled in Medicaid andChildren’s Special Health CareServices (N = 10,800)

Use of emergency departmentservices

African-Americans with neurologicaldisorders including epilepsy were morelikely to visit ED than non-Hispanicwhites.

Penberthy et al. (2005) [26] Inpatient admissions with statusepilepticus (SE) (N = 192)

Epilepsy care cost No black–white difference in overall costrelated to SE was found.

Diagnosis

Fletcher-Janzen (2000) [4] General literature review Multicultural issues in diagnosis andtreatment

Diagnosis can be obscured by culture(beliefs, manifestations of psychogenicseizures, etc.). Treatment can be difficultdue to cultural constructions, use ofalternative medicine, noncompliance, orethnic variations in response to AEDs.

(continued on next page)

M. Szaflarski et al. / Epilepsy & Behavior 9 (2006) 243–264 245

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Table 1 (continued)

Study (year) Population Aspect of care or clinicalmanagement

Findings

Treatment

Gadow and Kalachnik (1981)[31]

Special-education pupils withseizure and behavioral disorders(N = 3306)

AED and psychotropic drug use Fewer black students were receivingmedication compared with white peers(12.9% vs 18.4%, P < 0.02).

Cooper et al. (1997) [27] Children aged 0–18, new users ofanticonvulsants enrolled inTennessee Medicaid (N = 378)

AED use Nonwhites were less likely than whites tofill six or more prescriptions for AEDs inthe year following the first prescription,controlling for other factors (38% vs 59%,P = 0.002).

Hussein and Poser (1997) [39]Eldon (1998) [42] Grasela et al.(1999) [43] Ouellet (2001) [44]Fischer et al. (2003) [41] Miller(2003) [40]

Pharmacological studies Response to AEDs No racial differences in response tolamotrigine, pregabalin, andfosphenytoin were observed. Racialdifferences were detected in adults’response to lamotrigine adjunctivetherapy in adults and in infants’ andchildren’s response to gabapentin.However the differences were notclinically relevant, and no dosageadjustment for nonwhites wasrecommended.

Snodgrass et al. (2001) [30] Pediatric outpatients withepilepsy (N = 191)

AED use, compliance Non-Caucasians were less likely to becompliant than Caucasians.

Berg et al. (2003) [35] Epilepsy patients in six medicalcenters (N = 565)

Receiving epilepsy surgery Hispanic (52%), African-American (63%),white (73%), Asian (74%); overallP < 0.03.

Burneo and Martin (2004) [48] Published epilepsy clinical studies(N = 318)

Clinical trials Only 6.6% of epilepsy clinical trialsreported the race/ethnicity of studyparticipants; only 1.9% attempted toanalyze racial/ethnic differences.

Lawn et al. (2004) [37] Women undergoing anteriortemporal lobectomy (N = 195)

Receiving epilepsy surgery Of the 195 women, 17 (9%) were African-American and 1 (0.5%) was Indian. Tenof 26 patients with no identifiable riskfactors or seizures following a pregnancy(38%) and 3 of 9 patients with history ofeclampsia (33%) were black. Conclusionsregarding race are unclear because of themany biases in this study.

Burneo et al. (2005) [36] Patients discharged from thevideo/EEG unit at the Universityof Alabama, Birmingham(N = 432)

Receiving epilepsy surgery African-Americans (N = 30) were lesslikely than non-Hispanic whites toundergo surgery (OR = 0.3, 95%CI = 0.2–0.8; adjusted OR = 0.4, 95%CI = 0.2–1.2).

Burneo et al. (2005) [38] Patients who received epilepsysurgery at the University ofAlabama, Birmingham (N = 64;black N = 11)

Seizure recurrence after epilepsysurgery

African-Americans were more likely thannon-Hispanic whites to have seizurerecurrence (OR = 2.1, 95% CI = 0.6–8.0;adjusted OR = 1.7, 95% CI = 0.3–10.6).

246 M. Szaflarski et al. / Epilepsy & Behavior 9 (2006) 243–264

quite similar for blacks and whites [26]. Elsewhere, whiterace is reported to be an independent predictor of whethera child fills six or more prescriptions for anticonvulsantmedications in the year following the first prescription [27].

3.1.1. Disparities in points of care

Blacks may be more likely than whites to be treated forseizures in emergency departments (EDs), which suggestslimited access to a regular source of care for epilepsy.For example, in one ED-based study [28], seizure patientswere more likely to be black than white (79% vs 69%).Many of these predominantly black seizure patients wereindigent, had no regular source of medical care, and lackedinsurance or were covered by state medical assistance or

Medicaid. In addition, the patients with epilepsy had limit-ed access to epilepsy specialists, with only 14% receivingantiepileptic drugs (AEDs) and 57% exhibiting subthera-peutic AED blood levels (suggesting noncompliance).Few of these patients were referred to neurologists, andthere was limited communication with the primary treatingphysicians regarding changes in AED therapy. Pediatricstudies also suggest more frequent use of EDs [29] and lessfrequent use of AEDs [30,31] by African-American chil-dren than by white children. Another study [32] suggeststhat urban hospitals serve a large number of African-American and Hispanic patients, whose care and outcomesare often compromised by noncompliance, substanceabuse, and language barriers [4].

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Fig. 4. Epilepsy surgery and outcome, by race/ethnicity. Odds ratios(ORs) for African-Americans versus those for non-Hispanic whites. Solidsquare: mean OR; solid line: 95% confidence interval of OR. Source:Burneo et al. [36,38].

Fig. 2. Actual and age-adjusted rates of hospitalization for epilepsya per100,000 persons in the civilian population, United States, 1988–1992, by agegroup and race.b Source: Centers for Disease Control and Prevention [24].a International Classification of Diseases, Ninth Revision, Clinical Modi-fication, codes 345.0–345.9, as first listed diagnosis on hospitalizationrecord.b Because of differences in the racial designation of the denominatorpopulation in different years, race-specific rates for the total period could beestimated only for whites and for all other groups combined.

M. Szaflarski et al. / Epilepsy & Behavior 9 (2006) 243–264 247

Despite the reported barriers to care and basic treat-ment, minority patients with epilepsy are also describedas actively seeking medical attention. A study of adherencein childhood epilepsy within a diverse Californian popula-tion found that non-English-speaking and recent immi-grant families were more likely than the native residentsto keep appointments and avoid unscheduled contacts withphysicians or medical staff [33]. The study also found thathigher acculturative risk was associated with lower seizureseverity, possibly due to referral patterns: higher-income,nonminority families were more likely to be referred tothe epilepsy clinic from other providers, whereas minority,lower-income families were more likely to begin treatmentin the epilepsy clinic or in the ED.

Native Americans, such as Tewa Pueblos of New Mex-ico, have been reported to seek prompt medical attentionfor seizure attacks, as well as regular long-term epilepsy-re-lated care [34]. The choice of place of care for Tewa chil-dren with epilepsy was related to the complexity of thechild’s disorder [34]. For children whose seizures were wellcontrolled with anticonvulsant medications, families usedthe Indian Health Service (IHS) exclusively. However, fam-ilies with children with poorly controlled seizures and/ormultiple handicaps were likely to seek help outside theIHS system (e.g., speech or physical therapy). IHS couldnot provide continuity of care and the necessary therapeu-tic services to those children, mainly because of high staffturnover and insufficient funding.

3.2. Disparities in state-of-the-art therapies

Studies of disparities in the use of state-of-the-art thera-pies have only begun to appear in the literature and have

been restricted largely to epilepsy surgery. In one study,race/ethnicity was marginally associated with having sur-gery: 52% of Hispanics and 63% of African-Americanshad surgery compared with 73% of white and 74% of Asianpatients (overall P = 0.03) (Fig. 3) [35]. Another study [36]also reported that African-Americans were significantlyless likely than non-Hispanic whites to undergo surgery(OR = 0.3; 95% CI = 0.2–0.8); this disadvantage was onlyslightly reduced, albeit lost statistical significance, afteradjustment for type of epilepsy, demographic factors,insurance, and socioeconomic status (OR = 0.4, 95%CI = 0.2–1.2); (Fig. 4). In interpreting these findings, thedirection and magnitude of the differences in receipt of sur-gery may be more important than the statistical signifi-cance given the relatively small sample sizes of theminority racial and ethnic groups involved. Other research-ers reported a small proportion (9%) of African-Americansamong women undergoing epilepsy surgery, but racial dif-ferences in the procedure remained unexplored in thatstudy [37].

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248 M. Szaflarski et al. / Epilepsy & Behavior 9 (2006) 243–264

Only one study has examined racial/ethnic differences inresponse to epilepsy surgery. Although not a statisticallysignificant finding, African-Americans (N = 11) were morelikely than non-Hispanic whites to experience seizure recur-rence after temporal lobe epilepsy surgery before and afteradjustment for duration of epilepsy, history of febrile sei-zures, lateralization of epileptogenic focus, handedness,and age (Fig. 4) [38]. Again, because the patient samplehas few African-Americans, the direction and magnitudeof the difference may be more important than the statisticalsignificance of this finding.

Studies of response to various AEDs, for example,lamotrigine [39], pregabalin [40], and fosphenytoin[41,42], report no racial differences; clinically nonrelevantracial differences have been reported with respect to lam-otrigine adjunctive therapy in adults [43] and for gabapen-tin therapy in infants and children [44]. Other studiessuggest differences in phenytoin metabolism betweenJapanese and white patients with epilepsy [45] and differ-ences in leukocyte presence in African-American andwhite American children [46,47], which may affectresponse to medications. In general, ethnic variations inresponse to AEDs may exist and can have consequencesfor disease management [4]. However, the current reportscome from clinical trials for which the participants’ raceor ethnicity is often not reported and subanalyses by raceor ethnicity have not been conducted. Only 6.6% of epi-lepsy clinical trials were found to report the race/ethnicityof study participants (usually, a black–white dichotomy),and only 1.9% attempted to analyze racial/ethnic differ-ences [48]. To what extent minorities participate in epilep-sy research remains uncertain; one study reports similarrecruitment rates for whites and nonwhites for geneticstudies of epilepsy [49].

3.3. Disparities in health outcomes associated with epilepsy

Several studies have explored the role of race/ethnicityin physical and psychosocial outcomes in patients with epi-lepsy and status epilepticus, including mortality, pregnancycomplications, and health-related quality of life (Table 2).A dated study [50] reported considerably higher rates ofmortality from epilepsy or epilepsy-related causes amongnonwhites than whites. The deaths were highest for non-white males, followed by nonwhite females, white males,and white females (Fig. 5). Although racial differences areobserved for deaths from epilepsy and from status epilepti-cus for all ages combined, more recent studies report noracial differences in mortality in adults with status epilepti-cus [51,52]. There are also a couple of studies of pregnancycomplications and outcomes. One study reported a rela-tively large proportion of African-American women withseizures following an eclamptic pregnancy, but no clearconclusions can be drawn because of study limitations[37]. In another study, neither maternal race nor socioeco-nomic status contributed to the higher risk of low birthweight, low Apgar score, or asphyxia in women with

epilepsy versus women without epilepsy [53]. However,prevalence of epilepsy in this study was much lower relativeto that in the general population, and, thus, the findingsmight not extend beyond this group of patients.

In addition to physical outcomes, racial and/or ethnicdifferences in psychosocial functioning in epilepsy havebeen considered. Cross-cultural differences are reported inan earlier review [4] that examined efforts to validate theQuality of Life in Epilepsy Inventory for use in nine lan-guages [54] and in an England–Sweden comparison of psy-chosocial functioning based on the Epilepsy PsychosocialEffects Scale (EPSES) [55]. However, the review identifiedno United States-based studies assessing psychosocial out-comes across racial/ethnic groups or any addressing ethnic-ity in some other way; one study specified the race of thesubjects (white) and generalized the findings to this partic-ular population [56].

Although there is additional literature regarding racial/ethnic differences in the psychosocial outcomes of patientswith epilepsy, the findings are inconclusive. These studiesfind no racial/ethnic differences in cognitive function(e.g., memory performance) [57], perceived stigma [58],behavior problems among children with new-onset seizures[59], or the relationship between stressful life events andincreased seizure occurrence [60] (only four nonwhitepatients were included in the last study). Other studies indi-cate better outcomes among blacks than whites. In onestudy, black adults with epilepsy reported fewer suicideattempts, higher optimism, and less severe problems withfamily adjustment than white patients [61]. In anotherstudy, black children with mild to moderate learning/be-havior disorders who were on polytherapy were less likelythan their white counterparts to experience greater symp-toms of anxiety [62].

Worse health outcomes, however, may be experiencedby Native Americans with epilepsy. Reports suggest thatindividuals with epilepsy from specific tribes of AmericanIndians experience serious social problems, such as socialisolation, alcoholism, and violent deaths [34,63]. Theproblems are particularly severe in the case of individualswhose seizures are not well controlled. It has been sug-gested that social stigma and isolation result in short lifeexpectancy in Navajos who have epilepsy [13]. However,in some tribes, the psychosocial adjustment of people withepilepsy may be easier, as suggested by a study of PuebloIndians, who treat children with epilepsy as normally aspossible [64].

Furthermore, comparative/cross-national researchshows that quality of life in epilepsy tends to be lower innon-Western populations vis-a-vis Western countries [65].A similar effect could be observed in the United Statesfor minority patients from communities characterized bytraditional culture and/or low socioeconomic development(e.g., Appalachians).

To date, the findings on epilepsy-related health out-comes are limited by small sample sizes and lack of dataon specific racial or ethnic populations, including Asians,

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Table 2Race and/or ethnicity and physical and psychosocial outcomes in epilepsy

Study (year) Population Outcome(s) Finding(s)

Mortality

Chandra et al. (1983) [50] Death certificates from a nationaldepository (National Center forHealth Statistics) listing epilepsy-related causes for 1971 and 1973–1978

Epilepsy-related mortality The average annual age-adjusted rates ofboth mortality due to epilepsy and alldeaths related to epilepsy were highest fornonwhite males, followed by nonwhitefemales, white males, and white females.

De Lorenzo et al. (1992) [51]and Towne et al. (1994) [52]

Adult and pediatric patients withepilepsy (N = 546), Medical Collegeof Virginia Medical Center,Richmond, VA, USA

Mortality from status epilepticus(SE)

No racial difference in mortality from SEwas observed.

Pregnancy outcomes

Yerby et al. (1985) [53] Birth certificate records fromWashington State for 1980 and 1981listing epilepsy as mother’s medicalcondition (N = 204)

Pregnancy complications andoutcomes in women with epilepsy

Maternal race or socioeconomic statuscould not explain the higher likelihood oflow birth weight, low Apgar scores, orasphyxia in women with epilepsy vswomen without epilepsy.

Lawn et al. (2004) [37] Women undergoing anteriortemporal lobectomy (N = 195)

Seizures following an eclampticpregnancy

Ten of 26 patients with no identifiablerisk factors or seizures following apregnancy (38%) and 3 of 9 patients withhistory of eclampsia (33%) were black.Conclusions regarding race are unclearbecause of the many biases in this study.

Psychosocial outcomes

Neutra et al. (1977) [63]and Levy et al. (1979) [13]

Navajos with epilepsy and hystericseizures, various samples

Social isolation, alcoholism,violent death

Social isolation was common. Menreported problems with alcohol, violence,and/or incest. Women reportedpromiscuity along with one or more otherproblems (alcohol, violence, incest, rape,suicide attempt).

Levy (1987) Navajo (N = 46) and Pueblo(N = 42) children with epilepsy andtheir parents

Psychosocial functioning Withdrawal and isolation were commonamong Navajos. Pueblos treated childrenwith epilepsy as normally as possible toavoid medical and social problemsassociated with seizures.

Trostle et al. (1989) [56] White patients aged 18–59 inRochester, MN, USA (N = 112)

Psychosocial functioning Levels of psychological functioning werehigher in the Rochester sample than inprevious Seattle- and Mississippi-basedstudies. This could be because theRochester population is white and largelyaffluent.

Debruyn (1990) [34] Tewa families (N = 28) with childrenwith epilepsy (N = 31)

Social isolation The families experienced social isolationand lack of social support.

Neugebauer et al. (1994) [60] Neurology clinic and practicepatients with epilepsy aged P17 years(N = 46, 4 nonwhite)

Stressful life events, seizureoccurrence

No white–nonwhite difference wasobserved in the relationship betweenstressful life events and increased seizureoccurrence.

Cramer et al. (1998) [54] Patients with epilepsy (N = 304) from25 U.S. clinics; translation of theQuality of Life in Epilepsy-31Inventory (QOLIE-31) involvingexperts and patients representing ninecountries

Quality of life (QOL) QOLIE-31 was translated and validatedfor use in a cross-cultural context.

Chaplin and Malmgren (1999)[55]

Epilepsy professionals (N = 24) and ahospital-based sample of patientswith epilepsy (N = 57) to validate theEpilepsy Psychosocial Effects Scale(EPSES)

Psychosocial functioning Responses to EPSES were similar inEnglish and Swedish patients, butattitudes toward employment, toward thefuture, and toward fear of seizures were asignificantly greater problem for patientsin England.

Elixhauser et al. (1999) [57] Adult patients with epilepsy(N = 138) from three epilepsy centersin the United States

Cognitive and psychologicalfunctioning

No racial/ethnic differences in memoryperformance were observed.

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M. Szaflarski et al. / Epilepsy & Behavior 9 (2006) 243–264 249

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Table 2 (continued)

Study (year) Population Outcome(s) Finding(s)

Fletcher-Janzen (2000) [4] General literature review Multicultural issues in quality-of-life assessment

Only one study noted the subjects’ethnicity (white). Some instruments havebeen translated into other languages andvalidated for cross-linguistic use, but littlecross-cultural validation has occurred.

Gehlert et al. (2000) [61] Urban black (N = 55) and white(N = 53) adults with epilepsy

Psychosocial and mentalfunctioning

No black disadvantage was observed.Blacks had fewer suicide attempts, higheroptimism, and less severe problems withfamily adjustment than whites.

Austin et al. (2002) [59] Children with new-onset seizures(N = 224) and siblings (N = 159)

Behavior problems No racial differences were observed.

Dilorio et al. (2003) [58] Adult patients with epilepsy(N = 314) from three epilepsy clinicsand a neurology clinic

Perceived stigma No racial/ethnic differences wereobserved.

Williams et al. (2003) [62] Children and adolescents withepilepsy (N = 101)

Anxiety Black children with mild to moderatelearning/behavior disorders who were onpolytherapy were less likely than theirwhite counterparts to experience greatersymptoms of anxiety.

Baker et al. (2005) [65] Hospital outpatient clinic patientswith epilepsy (N = 3889) in 10countries

QOL Cross-national differences are indicated.QOL was lower in Iran, the Gulf, and theNear East regions than in Europe.

0

1

2

3

4

5

6

7

White Male White FemaleNonwhite Male Nonwhite Female

Deaths due to epilepsy All deaths related to epilepsy

Dea

ths/

100,

000/

year

Fig. 5. Average annual rates of mortality due to epilepsy and all deathsrelated to epilepsy, United States, 1971 and 1973 through 1978. The ratesare age-adjusted to the 1970 U.S. population. Source: Chandra et al. [50].

250 M. Szaflarski et al. / Epilepsy & Behavior 9 (2006) 243–264

Hispanics, and other nonwhite groups. Further work isneeded to validate epilepsy-specific quality-of-life instru-ments for use in these diverse populations and to conductsystematic racial/ethnic comparisons of physical and psy-chosocial outcomes in epilepsy, with the goal of reducingany existing disparities.

3.4. Explanations of observed and purported disparities in

epilepsy

A number of factors have been proposed as explana-tions for health disparities, in general, and for epilepsyand other conditions, specifically. These factors includeeconomic resources, social support, patient–provider com-munication, attitudes toward treatment, and knowledge ofand beliefs about the specific disease. A number of studiesaddress the socioeconomic, psychosocial, and cultural fac-tors that may influence experiences with epilepsy care andtreatment among minority patients (Table 3).

3.4.1. Barriers to care

A qualitative study examined access to care, help-seek-ing behaviors, and adherence to treatment among Afri-can-American women with epilepsy [66]. Lack ofeconomic resources (e.g., to purchase medication) andproblems with transportation (e.g., driving restrictions,dependence on others) were identified as the most impor-tant barriers in accessing epilepsy care and adhering tomedical treatment in this population. Some study partic-ipants also indicated that their lives and financial situa-tion worsened after the onset of seizures. Anotherbarrier for the patients was a general lack of knowledgeabout epilepsy in the African-American community,which affects social relationships (stigma, social isolation)and help-seeking behaviors (e.g., postponement of medi-cal treatment). Patient–provider communication wasidentified as still another barrier. Many of the women feltuncomfortable discussing their condition with health careproviders, and few were aware of the availability of epi-lepsy specialty care in their city. Higher satisfaction withcare was expressed by women receiving epilepsy specialtycare than women managed solely by primary care physi-cians. Some women felt that their psychological andspiritual needs were not addressed. Finally, social sup-port was instrumental for accessing care and complyingwith medication, whereas family attitudes shaped viewsabout epilepsy surgery in the African-American womenwith epilepsy.

3.4.2. Attitudes toward specific therapies

In a small qualitative study, African-American patientswith epilepsy (N = 6) expressed negative attitudes towardsurgery [67]. Their lack of knowledge appeared to contrib-ute to the fear of surgery, because toward the end of thefocus group discussion, half of the participants indicated

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Table 3Psychosocial and cultural factors affecting epilepsy care/treatment in minority patients

Study (year) Population Factors affecting care/treatment

Neutra et al. (1977) [63] and Levy et al.(1979, 1981, 1987) [13,14,70]

American-Indians with seizures (epileptic andhysteric), various samples

Belief in moral source of epilepsy,complementary/alternative medicine (CAM) use

Debruyn (1990) [34] Tewa families (N = 28) with children with epilepsy(N = 31)

CAM use, interaction of biomedicine and CAM,patient–provider communication (e.g.,withholding information regarding CAM use),cultural sensitivity

Chin (1992) [23] Case study: Korean-American patient withepilepsy

CAM use, noncompliance, beliefs in supernaturalcauses of epilepsy, patient–providercommunication, use of translators/interpretersduring medical encounter, social support, familydynamics

Carrazana et al. (1999) [82] Descriptive study: 5 patients with seizures ofHaitian origin

Beliefs in supernatural causes of epilepsy, use offolk healers, denial of Western diagnosis,noncompliance

Wright et al. (2000) [75] Community-based sample (UK) based on medicalrecord review (N = 225,439; 39 practices)including South Asians

Cultural attitudes about epilepsy, stigma

Fadiman (2000) [72] A narrative about cross-cultural issues inprovision of care to the Hmong in Merced, CA,USA, involving a pediatric patient with epilepsy

Language and cultural barriers leading tomisdiagnosis and wrong treatment;noncompliance; culturally insensitiveinterventions; failure on the part of the medicalsystem to include the patient’s perspective and todeliver adequate cross-cultural care

Meinardi et al. (2001) [69] Summary of a workshop concerning the issue ofthe epilepsy treatment gap in developing countries

Traditional views/beliefs, avoidance of Westernproviders, use of folk treatments, noncompliancewith AEDs

Swarztrauber et al. (2003) [67] African-American adults with intractable epilepsy(N = 6)

Lack of knowledge about epilepsy surgery, fear ofsurgery, mistrust of physicians, lack of socialsupport

Paschal et al. (2005) [66] African-American women with epilepsy/patientsin epilepsy or primary care clinics (N = 10)

Access to care, lack of knowledge, patient–provider communication, social support

Ismail et al. (2005) [73,74] South Asian patients in the United Kingdom(N = 20), caregivers (N = 16), providers (N = 10);and nonepileptic South Asians (N = 16)

CAM use, beliefs in supernatural causes ofepilepsy, adherence to treatment, lack ofknowledge, limited access to information,language and communication barriers, problemsin interaction with health professionals,satisfaction with care, social support

Sirven et al. (2005) [71] Hispanics (N = 760) and non-Hispanics (N = 272) Limited knowledge of epilepsy, traditional beliefsabout cause of epilepsy, CAM use

Devlieger et al. (1994) [79], Hills andMacKenzie (2002) [81], Nubukpo et al.(2003) [80], and Lim and Pan (2005)[76]

Cross-national/cross-ethnic comparisons (generalor epilepsy populations)

Cross-cultural variation in knowledge andattitudes about epilepsy, CAM use for epilepsy,epilepsy-related stigma, social isolation;traditional vs Western cultures

Griggs and Engel (2005) [68] (Editorial) Patient preferences in treatment, provider-basedfactors (communication skills, subtle racial bias)

M. Szaflarski et al. / Epilepsy & Behavior 9 (2006) 243–264 251

they would consider epilepsy surgery if they were eligible.The study suggested that aversion to surgery, mistrust ofphysicians, and lack of social support (e.g., through epilep-sy support groups) are potential barriers to the state-of-theart treatment for African-American patients with epilepsy.Thus, patient ‘‘preferences for treatment’’ may well reflect aworse understanding of the therapies being offered. Racialdifferences in choice of epilepsy surgery are believed tooriginate not only in patient-based behaviors and attitudes,but also in the attitudes of the provider, including commu-nication skills, quantity and quality of information provid-ed, and subtle racial bias [68]. These have yet to beexamined as explanations of differences in epilepsy surgeryand other forms of care [68].

3.4.3. Cultural influences on the medical encounter

The literature suggests that some racial and ethnicgroups hold traditional, nonbiomedical views with respectto cause of epilepsy, as well as source of and treatmentfor epilepsy. As a result, racial/ethnic minority memberswith epilepsy are likely to seek complementary or alterna-tive therapies for epilepsy (e.g., spiritual healing). They alsoexperience stigma and social isolation. Furthermore, tradi-tional views and beliefs regarding epilepsy are believed tocontribute to the observed differences in epilepsy treatment[69].

3.4.3.1. Native Americans. Research on Native Americansillustrates the importance of culture in epilepsy-related

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medical encounters [34]. Tewa families in the study werewilling to discuss their children’s condition with medicalprofessionals and to seek help within the Western medicalsystem, and they did not hesitate to use emergency medicalservices for a child experiencing a seizure. However, thefamilies were not prepared to discuss all aspects of theirchild’s treatment, such as their traditional healing knowl-edge or practices. Traditional Tewa beliefs about causationand healing are contained within the religious and spiritualdomain, and discussion of the latter with non-Tewa is con-sidered taboo. The Tewa kept the two medical paradigmsseparate; that is, they were well versed in medical symp-tomatology and could easily answer questions about theirchild’s condition and possible environmental determinantswithout reference to their traditional paradigm of diseaseetiology and cure. The Tewa appreciated medical profes-sionals’ sensitivity and not asking questions during a med-ical encounter about traditional healing practices.

Traditional Navajo beliefs hold that individuals withepilepsy have broken moral norms (e.g., sibling incest)and are being punished by illness/seizures [13]. Traditionalmedicine is used among Navajos to treat seizures, thoughacculturated Navajos who are trained in biomedicine arethe preferred healers. In comparison with Navajos, Pueblosbelieve that there is something wrong with children whohave epilepsy and their families, though that ‘‘something’’remains vague and undefined, often suggesting emotionalimbalance [70]. Families of children with epilepsy experi-ence epilepsy-related stigma and lack of social supportfrom extended family [34]. Among the Tewa, self-blamefor a child’s epilepsy is a common phenomenon, especiallyamong mothers who believe that their behavior or ‘‘bad’’thoughts during pregnancy caused their children to haveepilepsy [34].

3.4.3.2. Hispanics. In a recent study [71] of 760 Spanish-speaking adults in seven large U.S. Hispanic metropolitanareas and 272 non-Hispanic controls, 21% of the Hispanicsreported no familiarity with epilepsy, significantly morethan non-Hispanics (percentage not reported; P < 0.001).Hispanics also had many misconceptions about epilepsy;for example, a third believed that a person with epilepsyis ‘‘dangerous to others.’’ Some Hispanics expressed thebelief that seizures are caused by sins, and that ‘‘exorcism’’would be a good remedy. In terms of treatment, Hispanicsstressed the importance of healing both the mind and bodyin the case of epilepsy, by avoiding stress, sleeping well,exercising, and so on. Hispanics were also more likely thannon-Hispanics to favor plural responses to a seizure—notonly calling 911, but also praying, restraining the person,or performing a religious ritual.

3.4.3.3. Asians. Systematic research regarding Asian-Amer-icans with epilepsy is lacking. Nonsystematic researchbased on case studies of Korean [23] and Hmong [72]patients with epilepsy describe the cross-cultural influenceson managing the illness. The readings document the immi-

grants’ beliefs in the supernatural causes of the illness, lackof trust in Western providers, and combined use of Wes-tern medicine and holistic traditional medicine and healingrituals for epilepsy. Management of the patients was chal-lenging to Western providers because of medication non-compliance, potential drug-to-drug interactions with theuse of Western and herbal treatments, and the need touse translators and cultural interpreters, who were oftenunavailable. Provider-based factors, such as lack of cultur-al competence, are indicated as potential points of inter-ventions to improve health care of minority patients withepilepsy.

Similar cross-cultural issues and barriers to epilepsycare are noted in studies of South Asians in the UnitedKingdom, although compliance with conventional medi-cation was high [73–75]. Patient satisfaction with care var-ied with the type of epilepsy provider, with the greatestdissatisfaction experienced in relation to primary careand the highest praise reserved for specialist-based epilep-sy care, especially care received from nurses [74]. As withany broad racial/ethnic category, knowledge, attitudes,and perceptions with respect to epilepsy and epilepsy careare not uniform across various Asian groups, as suggestedby comparative surveys conducted in 10 Asian countries[76]. The limited information about Asians and epilepsyin the United States is supported by evidence from recentstudies of general health care [77] and mental illness [78]among Asian-Americans, which also point to such cultur-al issues as linguistic barriers and limited trust in Westernmedicine.

3.4.3.4. Other ethnic/cultural comparisons. Cross-nationalcomparisons (e.g., Zimbabwe vs the U.S. Midwest, orTogo/Benin vs France) suggest that traditional views aboutepilepsy, use of complementary/alternative medicine totreat epilepsy, and epilepsy-related stigma and social isola-tion are more prevalent in non-Western cultures vis-a-visWestern populations [79–81]. A United States-based report[82] describes five patients of Haitian origin who were expe-riencing seizures. In the original culture, the seizures wereattributed to possession by Voodoo spirits. The patientswere treated by the local priests, did not see a physician,and continued to have seizures. Treatment with AEDs inthe United States resulted in full or partial seizure control.Obstacles in disease management included denial of Wes-tern diagnosis, continued traditional beliefs, and noncom-pliance with therapy. Similar issues may be encounteredin the treatment of immigrants from other non-Westerncountries. For example, alternative diagnoses to epilepsy(e.g., pseudoseizures or psychogenic seizures) can be cul-ture bound and difficult to assess, as has been illustratedwith the case of ataque de nervios, a seizurelike event mostoften observed among Hispanic women [4]. These casesand examples illustrate the power of culture in the diagno-sis and treatment of epilepsy, and they suggest a great needfor developing culturally sensitive approaches to epilepsycare.

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M. Szaflarski et al. / Epilepsy & Behavior 9 (2006) 243–264 253

4. Directions for future studies

Current understanding of disparities in the occurrence,treatment, and outcomes of epilepsy is poorly developedbecause of the limited number of racial and ethnic groupsstudied, small sample sizes, and the limited number ofaspects of care examined. The few studies of treatment,however, suggest that substantial disparities in care exist.The scientific community has appropriately recommendedmore comprehensive studies of racial/ethnic differences inthe state-of-the-art care for epilepsy [3], that is, studies ofthe quality of epilepsy care across the broad range of pro-viders, treatments, and populations [83]. We offer severalspecific directions in this regard.

4.1. Recommendation 1: Ensure greater representation of the

diverse groups affected by epilepsy in study populations

First, future research on epilepsy care and treatmentshould have a wide representation of patients fromdiverse racial/ethnic backgrounds (for definitions, see1997 OMB Directive 15: www.whitehouse.gov/omb/fed-reg/ombdir15.html). The racial/ethnic minorities shouldbe compared with the majority and with each other. Dis-advantaged groups should also be studied in depth. Ofnote, the study populations must be of sufficient size thatthe findings provide clarity on whether disparities exist inthe aspect of treatment investigated. The absence ofracial/ethnic diversity in current studies may have far-reaching consequences by potentially influencing so-calledevidence-based reviews, such as the Drug EffectivenessReview Project reports [84], which are used by moreand more states and insurers as justification to limit cov-erage of prescription medication (e.g., institution of so-called preferred drug lists or guides). This could lead toeven greater barriers to care, increasing racial/ethnicdisparities.

Future studies may wish to target patients with medi-cation-resistant (intractable, refractory) epilepsy as thisis the patient population for whom state-of-the-art thera-pies are most likely to be used. As a first step, a standarddefinition of medication-resistant epilepsy is needed;numerous definitions exist and can be arbitrary [85]. Ingeneral, patients who continue to have seizures despiteoptimal trials with two AEDs in monotherapy and/or athird AED in monotherapy or a combination of twodrugs are believed to have medication-resistant epilepsy[86]. This group constitutes more than 30% of patientswith epilepsy [86] and is known to have an especiallylow health-related quality of life [87]. Major progress inthe evaluation and treatment of patients with medica-tion-resistant seizures has been noted in the last two dec-ades [85]. These state-of-the-art diagnostic and treatmentoptions are known to significantly improve quality of lifein patients with medication-resistant epilepsy [88], butwhether minority and white patients receive this state-of-the-art care at the same rate remains unknown.

4.2. Recommendation 2: Ensure greater diversity in the

clinical settings

All of the relevant health care settings and providersshould be examined in future studies of disparities. Patientswith medication-resistant epilepsy may be managed by epi-lepsy specialists, general neurologists, or primary care physi-cians. Others may not have a regular source of medical careand visit emergency services as needed. Access to care (e.g.,insurance, availability of services) is an important determi-nant of the choice of provider. The extent to which differentracial/ethnic groups use the various providers must be care-fully assessed because quality of care or satisfaction with caremay vary across clinical settings. In addition, the use of com-plementary/alternative providers for treatment of epilepsyamong various racial/ethnic groups should be explored(e.g., folk healers, acupuncturists), as complementary/alter-native therapies may have implications for biomedical treat-ment (e.g., noncompliance, drug-to-drug interactions).

4.3. Recommendation 3: Consider the full spectrum of

clinical management of a patient with epilepsy

To better understand the components of health care andtreatment in epilepsy, the general process of care forpatients with epilepsy needs to be carefully examined—from the point of entrance to specialist care through thevarious steps in disease management. Future studies shouldexamine racial/ethnic differences in receiving particular epi-lepsy treatments or diagnostic tests. In particular, anyracial/ethnic differences in the use of old versus newerAEDs and surgical procedures are of interest. Althoughefficacy and tolerability are similar for standard AEDsand many of the newer AEDs [89], most of the newer drugsare better tolerated, making them easier and safer to use inmany patients [90]. Epilepsy surgery may be an option foronly some patients, offering greater seizure freedom andimprovement in quality of life compared with medical ther-apy alone [88]. Unfortunately, the cost of treatment variessignificantly, with epilepsy surgery being the most costly,followed by treatment with the newer AEDs, and treatmentwith the ‘‘old’’ AEDs (the most affordable). Because offinancial barriers, racial/ethnic minorities may not be receiv-ing the state-of-the-art or most optimal epilepsy treatments.

4.3.1. Recommendation 4: Investigate patient- and provider-based explanatory factors for uncovered disparities in care

Studies of disparities in epilepsy care should assess notonly the existence of differences but also the possible rea-sons. Theoretical models exist by which to guide the selec-tion of possible explanatory factors. As noted, numerousfactors have been shown to influence patterns of care forother diseases and conditions, including economic resourc-es, social support, patient–provider communication,attitudes toward treatment, and knowledge of and beliefsabout the specific disease. For access to care, the healthcare utilization model [91] is one theoretical framework

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that could be used, whereas for studies of patient–providerinteraction, there is the medical treatment model [92,93].These are complementary frameworks, each contributingan important part to the understanding of racial/ethnic dis-parities in health care.

5. Conclusion

There is a dearth of information on racial/ethnic differ-ences in the treatment of epilepsy. Emerging evidence sug-gests a black disadvantage in the receipt of state-of-the-arttreatment such as epilepsy surgery. An explanation mayreside, in part, with the patients’ understanding of the ther-apy, a factor that may be correctable through improvedhealth care provider communication. However, the fullarray of patient, provider, and health care system factorshas yet to be explored.

Future research should confirm and extend currentknowledge regarding racial/ethnic differences in the treat-

ment of adult epilepsy. Specifically, it is important to deter-mine if the differences observed for surgical interventionare found more broadly in the clinical management of epi-lepsy. Perhaps more importantly, future research needs toidentify likely mediators of the observed differences, thatis, points of intervention through which we might improvethe quality of care provided to patients with epilepsy fromdiverse populations. Beyond identifying points of interven-tion, future research should provide guidance in the designand testing of interventions that will have a high likelihoodof reducing the racial/ethnic disparities in the treatment ofadult epilepsy. To achieve these objectives, we recommendthat future studies (1) ensure greater representation of thediverse groups affected by epilepsy in study populations,(2) include a wide range of clinical settings as points ofcare, (3) examine the full spectrum of the clinical manage-ment of an epilepsy patient, and (4) investigate patient andprovider-based explanatory factors for uncovered dispari-ties in epilepsy care.

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Appendix A

Publications regarding race and/or ethnicity in the treatment of epilepsy, in chronological order

Authors Title Journal Year Method/sample Race- and/or ethnicity-related finding

Neutra et al. [63] Cultural expectations vsreality in Navajo seizurepatterns and sick roles

Culture, Medicine and

Psychiatry

1977 Quantitative; medical records of Navajopatients with epilepsy or hysteric seizuresin Public Health Service hospitals

Patients with epilepsy had higher rates of death,drunkenness, and crime than the hystericalpatients, and they were less likely to be free oftheir original symptoms after 11 years of follow-up.

Levy et al. [13] Life careers of Navajoepileptics and convulsivehysterics

Social Science &Medicine

1979 Qualitative/quantitative; medical recordsof inpatients with epileptic andnonepileptic seizures (N = 69); fieldinterviews; field survey

Traditional beliefs hold that the Navajo withepilepsy have broken moral norms and are beingpunished by illness/seizures. Navajo epilepticssuffer from social stigma and isolation and have ashort life expectancy. Traditional medicine hassometimes been used and sometimes has led toshort-term remission, but at other times it hasworsened the condition.

Gadow and Kalachnik[31]

Prevalence and patternof drug treatment forbehavior and seizuredisorders of TMRstudents

American Journal of

Mental Deficiency

1981 Quantitative; special-education pupilswith seizure and behavioral disorders(N = 3306)

Fewer black students were receiving medicationcompared with white peers (12.9% vs 18.4%,P < 0.02).

Chandra et al. [50] Deaths related toepilepsy in the UnitedStates

Neuroepidemiology 1983 Quantitative; death certificates from anational depository (National Center forHealth Statistics) for 1971 and 1973–1978listing epilepsy-related causes

The average annual age-adjusted rates ofmortality due to epilepsy and of all deaths relatedto epilepsy were highest for nonwhite males,followed by nonwhite females, white males, andwhite females.

Yerby et al. [53] Pregnancy complicationsand outcomes in acohort of women withepilepsy

Epilepsia 1985 Quantitative; birth certificate recordsfrom Washington State for 1980 and 1981listing epilepsy as mother’s medicalcondition (N = 204)

Maternal race or socioeconomic status could notexplain the higher likelihood of low birth weight,low Apgar scores, or asphyxia in women withepilepsy vs women without epilepsy.

Levy [64] Psychological and socialproblems of epilepticchildren in foursouthwestern Indiantribes

Journal of Community

Psychology

1987 Qualitative/quantitative; medical recordsof Navajo (N = 46) and Pueblo (N = 42)Indian children with epilepsy; fieldinterviews

Denial of epilepsy and withdrawal were common.Navajo used medical services less frequently thanPueblos. Pueblos treated children with epilepsy asnormal to avoid medical and social problemsassociated with seizures.

Levy et al. [14] Hand Trembling, Frenzy

Witchcraft, and Moth

Maddness

(Book) 1987 Epidemiological survey/descriptive study Beliefs about epilepsy, help-seeking behaviors,and attitudes toward treatment and toward peoplewith epilepsy among several American Indiantribes are compared. Beliefs in spiritual sources ofepilepsy and combined use of Western providersand traditional healers/treatments are common.

Krumholz et al. [28] Seizure and seizure carein an emergencydepartment

Epilepsia 1989 Quantitative; epilepsy-related visits(N = 200) in an urban communityhospital emergency department

Seventy-nine percent of patients were black. Manyhad no regular source of care, lacked insurance/had public insurance. Only 14% were receivingAEDs, 57% had subtherapeutic AED blood levels.

Trostle et al. [56] Psychological and socialadjustment to epilepsy inRochester, Minnesota

Neurology 1989 Quantitative; white patients with epilepsyaged 18–59 in Rochester, Minnesota (N=112)

The Rochester sample had levels of psychologicalfunctioning higher than those reported in previousstudies based in Seattle and Mississippi. Thiscould be because Rochester population is whiteand largely affluent.

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Appendix A (continued )

Authors Title Journal Year Method/sample Race- and/or ethnicity-related finding

Debruyn [34] Tewa children who haveepilepsy: a health caredilemma

American Indian Alaska

Native Mental Health

Research

1990 Qualitative; medical record review,interviews, focus groups; Tewa Pueblos inNew Mexico; 31 children with epilepsy/28households

The Tewa are reluctant to discuss with non-Indianhealth care providers traditional healing practicesthat may be used simultaneously. Health careproviders should routinely ask a patient about hisor her perception of the traditional etiology of thedisease. The roles of the family and the Westernhealth care system are challenged. The response ofTewa extended families to children who haveepilepsy is complex and not necessarilysupportive.

Chin [23] This, that, and the other:managing illness in afirst-generation Korean-American family

Western Journal of

Medicine

1992 Case report An epilepsy case illustrates the complexity ofhealth behaviors and health-seeking methods usedby Korean-Americans, including common use ofWestern medicine along with holistic traditionalmedicine and healing rituals.

DeLorenzo et al. [51] Status epilepticus inchildren, adults, and theelderly

Epilepsia 1992 Quantitative; community cohort,Richmond, VA, USA

Race did not significantly affect mortality.

Towne et al. [52] Determinants ofmortality in statusepilepticus

Epilepsia 1994 Quantitative; adults with statusepilepticus (N = 253) admitted to theMedical College of Virginia

Race did not significantly affect mortality.

Neugebauer et al. [60] Stressful life events andseizure frequency inpatients with epilepsy

Epilepsia 1994 Quantitative; subjects (N = 46)maintained daily diaries for 10–36 weeksin which they recorded seizures and lifeevents

Events and seizures were not associated in subjectsgrouped by seizure type, age at seizure onset,current age, ethnicity, educational level, or maritalstatus.

Devlieger et al. [79] Coping with epilepsy inZimbabwe and theMidwest, USA

International Journal of

Rehabilitation Research

1994 Qualitative; adults (N = 37:27 fromZimbabwe and 10 from the Midwest,USA) using open-ended questionnaire

Major cultural influences in Zimbabwe stand outas being different from those in the Midwest: thebelief in external control and cause of mental andphysical health and cultural conflict.

Centers for DiseaseControl andPrevention [24]

Hospitalization forepilepsy: United States,1988–1992

Mortality Morbidity

Weekly Report

1995 Quantitative; nationally representativeepilepsy-related inpatient records

Age-adjusted hospitalization rates were lower forwhites than for all other racial groups combined(35 vs 51 per 100,000). Age-specific rates weresimilar for ages 0–14, but rates were higher inother age groups for the nonwhites.

Serge [32], cited inFletcher-Janzen [4]

Epilepsy in a large urbanpublic hospital in theMidwest

Poster Session atAmerican EpilepsySociety Annual Meeting,San Francisco, CA, USA

1996 Quantitative; urban hospital (CookCounty Hospital, Chicago) patients(N = 300)

Eighty-five percent of the patients were AfricanAmerican or Hispanic. The most commonetiology of epilepsy for African-Americans washead trauma, and for Hispanics,neurocysticercosis. Substance abuse, languagebarriers, and noncompliance were the mostcommon reasons for poor outcome. The studysuggests that these epilepsies were largelypreventable and cultural in a socioeconomic sense.

Cooper et al. [27] New use ofanticonvulsantmedications amongchildren enrolled in theTennessee MedicaidProgram

Archives of Pediatrics

and Adolescent Medicine

1997 Quantitative; children/new users ofanticonvulsant medications in 1992(N = 647)

White race and undergoing diagnostic test wereindependent predictors of a child filling six ormore prescriptions in the year following the firstprescription.

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Hussein and Posner [39] Populationpharmacokinetics oflamotriginemonotherapy in patientswith epilepsy:retrospective analysis ofroutine monitoring data

British Journal of

Clinical Pharmacology

1997 Quantitative; 158 Caucasians and 5Asians with newly diagnosed epilepsy andreceiving oral lamotrigine monotherapfor up to 48 weeks

Oral clearance was lower in Asians thanCaucasians, but race was not significant in an

sted model. The modest significant effect ofis unlikely to be clinically significant, and,

, no dosage adjustment was recommended.

Eldon [42] Clinicalpharmacokinetics offosphenytoin: anoverview

Neurologist 1998 Review of the pharmacokinetics offosphenytoin and phenytoin

Cramer et al. [54] Development and cross-cultural translations of a31-item quality of life inepilepsy inventory

Epilepsia 1998 Quantitative; patients with epilepsy(N = 304) from 25 U.S. clinics;translation of the QOLIE-31 instrumeinvolving experts and patientsrepresenting nine foreign countries

Carrazana et al. [82] Epilepsy and religiousexperiences: Voodoopossession

Epilepsia 1999 Descriptive study; 5 patients of Haitiaorigin with seizures

Elixhauser et al. [57] Relationship betweenmemory performance,perceived cognitivefunction, and mood inpatients with epilepsy

Epilepsy Research 1999 Quantitative; patients with epilepsy(N = 138) from 3 epilepsy centers in thUnited States

Chaplin and Malmgren[55]

Cross-culturaladaptation and use ofthe EpilepsyPsychosocial EffectsScale: comparison of thepsychosocial effects ofchronic epilepsy inSweden and the UnitedKingdom

Epilepsia 1999 Quantitative; validation of the EPSESusing epilepsy professionals (N = 24) aa hospital-based sample of patients wiepilepsy (N = 57)

Grasela et al. [43] Populationpharmacokinetics oflamotrigine adjunctivetherapy in adults withepilepsy

Journal of Clinical

Pharmacology

1999 Quantitative; three controlled clinicaltrials in the United States, adults withepilepsy on lamotrigine adjunctivetherapy

y adjuracethus

Patient race has no effect on fosphenytoinpharmacokinetics.

nt

The results support the reliability and validity ofthe QOLIE-31 as a measure of health-relatedquality of life in epilepsy. Many problems wereencountered during translation and adaptation foruse in other languages due to cross-cultural/cross-linguistic variations. The foreign translations willbe useful in further/comparative epilepsy research.

n In the original culture, the seizures were attributedto possession by Voodoo spirits. The patients weretreated by the local priests, did not see a physician,and continued to have seizures. Treatment withAEDs in the United States resulted in full orpartial seizure control. Obstacles in diseasemanagement included denial of Westerndiagnosis, continued traditional beliefs, andcompliance.

eNo racial/ethnic differences in memoryperformance were found.

ndth

Although their interpretations of problems aresimilar, attitudes toward employment, towardmedication, and toward fear of seizures wereconsidered more serious in the United Kingdom,whereas social isolation was considered more of aproblem in Sweden.

The study suggests a 25% reduction in lamotrigineapparent oral clearance in non-Caucasians vsCaucasians. Until a plausible physiologicalexplanation or confirmation of this findings isavailable, dosing in non-Caucasians should bebased on clinical response.

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Appendix A (continued )

Authors Title Journal Year Method/sample Race- and/or ethnicity-related finding

Fletcher-Janzen [4] Multiculturalperspectives on theneuropsychologicalassessment andtreatment of epilepsy

Handbook of Cross-

Cultural

Neuropsychology (bookchapter)

2000 General literature review Research indicates racial/ethnic disparities in theoccurrence of epilepsy, due mainly tosocioeconomic and cultural/behavioral factors.Diagnosis can be difficult because of culturallyembedded beliefs and behaviors (e.g., voodoopossession, ‘‘ataque de nervios’’). Quality-of-lifeassessment fails to consider cross-culturalperspectives. General considerations regardingethnicity for epilepsy providers are offered.

Wright et al. (75) A population-basedstudy of the prevalence,clinical characteristicsand effect of ethnicity inepilepsy

Seizure 2000 Quantitative; a community-based cross-sectional study based on medical recordreview (N = 225,439) in 39 practices inthe United Kingdom

The prevalence of epilepsy was lower for SouthAsians than for the rest of the population(OR = 0.46, 95% CI = 0.38–0.57). The finding isnoted as surprising; further research into culturalattitudes toward epilepsy and the impact of stigmain the South Asian population in the UnitedKingdom is recommended.

Gehlert, DiFrancesco,and Chang (61)

Black–white differencesin the psychosocialoutcomes of epilepsy

Epilepsy Research 2000 Quantitative; black (N = 55) and white(N = 52) urban persons with epilepsy

Whites were more likely to have consideredsuicide and to have higher scores on the familybackground scale of the Washington PsychosocialSeizure Inventory. Blacks had lower scores on theBeck Hopelessness Scale and more optimisticattributional styles. The authors speculate that thenature of family and community supports maydetermine intergroup differences.

Mitchell et al. (33) Adherence to treatmentin children with epilepsy:who follows ‘‘doctor’sorders’’?

Epilepsia 2000 Quantitative; children with epilepsy aged4–13 (N = 119) recruited for alongitudinal study from an ethnicallydiverse epilepsy clinic

45% of families spoke languages other thanEnglish as a primary language (mostly Spanish;also Korean, Chinese, and Armenian). Non-English-speaking families and recent immigrantswere more likely to keep appointments and avoidunscheduled contacts with physicians or medicalstaff. Higher acculturative risk was associated withlower seizure severity, probably due to referralpatterns. Higher-income, nonminority familieswere more likely to have been referred afterbeginning treatment elsewhere, whereas minority,low-income families were more likely to begintreatment in the epilepsy clinic or in the emergencydepartment.

Fadiman [72] ‘‘The Spirit Catches Youand You Fall Down’’:epilepsy and the Hmong

Epilepsy & Behavior 2000 A narrative about cross-cultural issues inprovision of care to the Hmong inMerced, CA, USA, involving a pediatricpatient with epilepsy

Language and cultural barriers resulted in initialmisdiagnosis and wrong treatment and, later, innoncompliance and a culturally insensitive socialservice intervention. Frustration of the providers,the family perspective, and failure of the medicalsystem to deliver adequate cross-cultural care arediscussed.

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Authors Title Journal Year Method/sample Race- and/or ethnicity-related finding

Begley et al. [25] Early treatment cost inepilepsy and how itvaries with seizure typeand frequency

Epilepsy Research 2001 Quantitative; epilepsy-relatedhealth care costs from onset to 4years follow-up for twopopulation-based incidencesamples

There was a 2.2-fold difference in Year 4 costbetween patients with a single seizure on onset and

e having recurrent seizures at the rate of moreone per month, controlling for seizure type,gender, and ethnicity. Ethnicity (white vsr) was not a significant confounder.

Snodgrass et al. [30] Pediatric patients withundetectableanticonvulsant bloodlevels: comparison withcompliant patients

Journal of Child Neurology 2001 Quantitative; pediatricoutpatients with epilepsy(N = 191)

-Caucasian patients were more likely to becompliant than Caucasian patients.

Meinardi et al. [69] The treatment gap inepilepsy: the currentsituation and waysforward

Epilepsia 2001 Summary of a workshopconcerning the issue of theepilepsy treatment gap indeveloping countries

ditional views and beliefs prevent people from

Ouellett et al. [44] Populationpharmacokinetics ofgabapentin in infantsand children

Epilepsy Research 2001 Quantitative; dose–responsestudy in pediatric population

Hills and MacKenzie[81]

New Zealandcommunity attitudestoward people withepilepsy

Epilepsia 2002 Quantitative; telephoneinterviews with a random sampleof persons aged >17 (N = 400)

Austin et al. [59] Recurrent seizures andbehavior problems inchildren with newlyrecognized seizures: aprospective study

Epilepsia 2002 Quantitative; children withnew-onset seizures (N = 224) andsiblings (N = 159)

Dilorio et al. [58] Association of stigmawith self-managementand perceptions ofhealth care among adultswith epilepsy

Epilepsy & Behavior 2003 Quantitative; patients withepilepsy from two epilepsycenters and a neurology clinic(N = 314)

Swarztrauber et al. [67] Patient attitudes abouttreatments forintractable epilepsy

Epilepsy & Behavior 2003 Qualitative; four focus groups ofadults with intractable epilepsy(N= 10), adolescents withintractable epilepsy (N = 4),parents of adolescents withintractable epilepsy (N = 4), andAfrican-Americans withintractable epilepsy (N = 6)

Miller et al. [40] Exposure–responseanalysis of pregabalinadd-on treatment ofpatients with refractorypartial seizures

Clinical Pharmacology &Therapeutics

2003 Quantitative; patients withrefractory partial seizures(N = 1042)

thosthanage,otheNonnon

Tra

seeking Western medical treatment, encourage useof folk treatments, cause noncompliance withantiepileptic medications, and, overall, contributeto the existing treatment gap.Creatinine clearance was greater in black subjectsthan in subjects of other races. Possibleexplanations are discussed. The post hoc estimateswere similar for the racial groups, and no dosageadjustment for blacks is required.Knowledge of epilepsy was lower among people ofMaori or non-European ethnicity compared withtheir European counterparts. Comparison withother industrial countries revealed cross-nationalvariations in the knowledge of epilepsy.No racial differences in behavior problems inchildren with new-onset seizures were observed.

No racial/ethnic differences in perceived stigmawere observed.

None of the African-Americans had heard muchabout epilepsy surgery, and they expressed a greatdeal of fear about epilepsy surgery. Mistrust ofphysicians and lack of social support (e.g.,through epilepsy support groups) are potentialbarriers to the state-of-the art treatment forAfrican-American patients with epilepsy.

75% of patients experienced decrease in seizurefrequency with increasing doses of pregabalin.Race did not affect the dose–response relationship.

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Appendix A (continued )

Authors Title Journal Year Method/sample Race- and/or ethnicity-related finding

Theodore [2] Health disparities inepilepsy

AES News 2003 Commentary Racial/ethnic minorities, inner-city residents, andpeople of low socioeconomic status experiencebarriers to epilepsy treatment (access to care,culture, communication) and epilepsy-relatedstigma.

Nubukpo et al. [80] Comparison ofsociocultural attitudestowards epilepsy inLimousin (France), inTogo, and in Benin(Africa) (article inFrench)

Medecine Tropicale: Revue du

Corps de Sante Colonial

2003 Qualitative/quantitative; epilepticpatients in Togo and Benin (Africa) andFrance

The number of people who believed insupernatural causes of epilepsy was higher inTogo and Benin (T/B) than in France. Fewpatients in France thought that the disease wascontagious vs many in T/B. More patients inFrance than in T/B were aware of the relationshipof epilepsy to alcohol and drug abuse and cerebralinjury. Patients in France were more likely toconsult a physician and use medical drugs for thetreatment of epilepsy than their counterparts in T/B. Patients in Togo often complained of socialexclusion.

Williams et al. [62] Anxiety in children withepilepsy

Epilepsy & Behavior 2003 Quantitative; children and adolescentswith epilepsy (N = 101)

Caucasian children and adolescents with mild tomoderate learning/behavior disorders who wereon polytherapy were more likely to experiencegreater symptoms of anxiety than African-Americans.

Fischer et al. [41] Fosphenytoin: clinicalpharmacokinetics andcomparative advantagesin the acute treatment ofseizures

Clinical Pharmacokinetics 2003 Review No racial differences in fosphenytoinpharmacokinetics have been found.

Berg et al. [35] Multicenter study ofepilepsy surgery:recruitment and selectionfor surgery

Epilepsia 2003 Quantitative; surgical candidates(N = 565) at seven surgical centers

Race/ethnicity was marginally associated withhaving surgery; Hispanic patients (52%) were theleast likely to undergo surgery, and African-Americans (63%) were somewhat less likely tohave surgery compared with white (73%) andAsian (74%) patients (overall P = 0.03).

Burneo and Martin [48] Reporting race/ethnicityin epilepsy clinical trials

Epilepsy & Behavior 2004 Quantitative; review of published clinicaltrials (N = 318)

Only 6.6% of clinical trials in epilepsy reported therace/ethnicity of study participants, and only 1.9%tried to analyze possible differences between them.

Pollack et al. [29] Emergency departmentuse among Michiganchildren with specialhealth care needs: anintroductory study

Health Services Research 2004 Quantitative; children dually enrolled inMedicaid and Children’s Special HealthCare Services (N = 10,800)

Use of emergency services for neurologicalproblems was greater for African-Americanchildren than non-Hispanic whites.

Lawn et al. [37] Eclampsia, hippocampalsclerosis, and temporallobe epilepsy: accident orassociation?

Neurology 2004 Quantitative; clinical chart review forwomen undergoing anterior temporallobectomy (N = 195)

Of the 195 women, 17 (9%) were African-American and 1 (0.5%) was Indian. Ten of 26patients with no identifiable risk factors orseizures following a pregnancy (38%) and 3 of 9patients with history of eclampsia (33%) wereblack. Conclusions regarding race are unclearbecause of the many biases in this study.

Griggs and Engel [68] Epilepsy surgery and theracial divide

Neurology 2005 Editorial Disparities are likely due to patient and providerfactors. Patient role should not be overestimated.

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Burneo et al. [36] Racial disparities in theuse of surgical treatmentfor intractable temporallobe epilepsy

Neurology 2005 Quantitative; patients with temporal lobeepilepsy (N = 432) in Alabama andsurrounding states

Seventy patients underwent surgery; AfricanAmericans were less likely than non-Hispanic whites

rgo surgical treatment (OR = 0.3, 95%2–0.8). After demographic, socioeconomic,ce, and clinical factors were controlled for,

Baker et al. [65] Quality of life of peoplewith epilepsy in Iran, theGulf, and Near East

Epilepsia 2005 Quantitative; questionnaires completedby patients from hospital outpatientclinics (N = 3889) in 10 countries

Ismail et al. [73] Religious beliefs aboutcauses and treatment ofepilepsy

British Journal of General

Practice

2005 Qualitative interviews with South Asianpatients (N = 20), caregivers (N = 16),providers (N = 10); and two focus groupwith nonepileptic South Asians (N = 16in England

Ismail et al. [74] South Asians andepilepsy: exploring healthexperiences, needs, andbeliefs of communities inthe north of England

Seizure 2005 Qualitative interviews with South Asianpatients (N = 20), caregivers (N = 16),providers (N = 10); and two focus groupwith nonepileptic South Asians (N = 16in England

Lim and Pan [76] Knowledge, attitudes,and perceptions ofepilepsy in Asia: towarda uniform study protocol

Epilepsia 2005 Editorial

Ottman et al. [49] Recruitment of familiesfor genetic studies ofepilepsy

Epilepsia 2005 Quantitative; families (N = 320) recruitefrom private physicians, clinics, and self-referrals

Paschal et al. [66] Stigma and safe havens:a medical sociologicalperspective on African-American femaleepilepsy patients

Epilepsy & Behavior 2005 Qualitative, pilot study; ethnographicinterviews with African-American femalwith epilepsy (N = 10)

Sirven et al. [71] Que es la Epilepsia?Attitudes and knowledgeof epilepsy of Spanish-speaking adults in theUnited States

Epilepsy & Behavior 2005 Quantitative; survey of Spanish-speakinadults (N = 760) and non-Hispaniccontrols (N = 272)

to undeCI = 0.insuran

African-Americans had a 60% less chance (OR = 0.4,95% CI = 0.2–1.2).Epilepsy and its treatment were perceived tosignificantly affect quality of life (QOL). QOL wasfound to be lower in Iran, the Gulf, and the Near Eastregions than in Europe.

s),

More than half of the respondents attributed theillness to fate/God. Some experienced stigma.Traditional healing system was strong; religiospiritualtreatments were sought in the face of failure ofWestern medicine (seen as complementary).

s),

Compliance with conventional medication was high.The main issues regarding the provision of serviceswere: lack of appropriate information/advice;language and communication barriers; and problemsin interaction with health professionals. Also discussedwere the potential merits of attending support groups.Greatest dissatisfaction was expressed in relation toprimary care, whereas the highest praise was reservedfor specialist epilepsy nurses.Surveys conducted among Chinese in China, Taiwan,Malaysia, Singapore, and Hong Kong demonstratedsimilarities as well as differences in certain aspects ofthe knowledge, attitude, and perceptions of epilepsy(KAPE) in Asia. These suggest that KAPE may notbe uniform among various Asian groups.

d Among private patients, the study participation ratesof whites (16%) and nonwhites (19%) were similar.

esFour major obstacles to care were indicated: limitedfinancial resources, lack of knowledge about epilepsy,poor patient–provider communication, and lack ofsocial support. Social support impacted seekingsurgery, purchasing medication, adherence totreatment, and transportation. Lack of knowledge/misinformation and poor communication withproviders led to the feelings of social stigma.

g 21% of Hispanics report no familiarity withepilepsy; many appear misinformed about itssource (e.g., ‘‘sins’’) or treatment (e.g.,‘‘exorcism’’).

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262 M. Szaflarski et al. / Epilepsy & Behavior 9 (2006) 243–264

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