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1 Epilepsy & Behvior 20 (2011) Contents lists vilble t ScienceDirect Epilepsy & Behvior journl homepge: Detecting helth disprities mong Cucsins nd Africn-Americns with epilepsy Rmon Edmundo D. Butist, Deepli Jin Comprehensive Epilepsy Progrm, Deprtment of Neurology, University of Florid Helth Sciences Center/Jcksonville, USA rticle info bstrct Article history: Received 6 September 2010 Revised 15 October 2010 Accepted 16 October 2010 Avilble online 3 December 2010 Keywords: Africn-Americns Beliefs About Medicines Questionnire Cucsins Epilepsy Helth disprities Rce Rcil disprities Seizures Seizure control Objective: The im of the study ws to determine whether Africn-Americns nd Cucsins who receive cre t tertiry epilepsy center cn be distinguished on vriety of demogrphic, clinicl, nd psychosocil vribles. Methods: We surveyed 111 consecutive ptients followed t tertiry epilepsy center. Results: On univrite nlysis, Africn-Americns hd significntly more seizures (P=0.03), lower scores on the Beliefs About Medicines Questionnire Specific (Necessity minus Concerns) (BMQ-S) (P=0.01), nd higher scores on the BMQ Generl (BMQ-G) (P=0.02). In binry logistic regression with rce s the trget vrible, higher seizure frequency remined significntly ssocited with being Africn-Americn (P=0.04). After ordinl regression with seizure frequency s the trget vrible, being Africn-Americn (P=0.04) nd higher BMQ-G scores (P=0.02) remined significntly ssocited with incresed seizure frequency. Conclusion: Compred with Cucsins, Africn-Americns hve higher seizure frequency nd scores on the BMQ indicting higher mistrust of medictions. Aside from rce, ttitudes towrd medictions re lso independently ssocited with seizure control Elsevier Inc. All rights reserved. 1. Introduction Helth disprities continue to exist in epilepsy cre. In study by Hussin nd collegues [1], the incidence of epilepsy ws higher in cohort of elderly Africn-Americns when compred with Cucsins. Trgiclly, the mortlity rtes from epilepsy re lso higher in nonwhite individuls [2]. Although the reson for these disprities my be the disese itself, socioeconomic fctors such s decresed finncil resources contribute to poor epilepsy cre [3]. Stndrds of epilepsy cre still differ between Africn-Americns nd Cucsins. Africn-Americns re more likely to be dignosed in n emergency room nd nonspecilized setting which increses the chnce of receiving suboptiml cre [4,5]. An issue tht hs not been well investigted is the ttitude towrd medictions of minority ptients with epilepsy. This is especilly relevnt in the epilepsy popultion, in which the vst mjority of ptients use ntiepileptic drugs (AEDs) s their sole method of seizure control [6] nd in which the ntionl costs of AED therpy ccount for up to 30% of the totl costs of epilepsy cre [7]. In study of ptients with different chronic illnesses (crdic, renl, sthm, nd oncology), it ws shown tht negtive beliefs regrding the importnce of medicines resulted in poor dherence, nd tht Corresponding uthor. Deprtment of Neurology, University of Florid HSC/ Jcksonville, 580 West Eighth Street, Tower One, Ninth Floor, Jcksonville, FL 32209, USA. E-mil ddress: rmon.butist@jx.ufl.edu (R.E.D. Butist). mediction beliefs were even more powerful predictors of dherence thn clinicl nd sociodemogrphic fctors [8]. Poor dherence to AED tretment is ssocited with poorer seizure control [9] nd incresed costs of helth cre [10]. The im of this study ws to determine whether demogrphic, clinicl, nd psychosocil fctors distinguish Africn-Americn nd Cucsins with epilepsy. In prticulr, we sought to determine whether ttitudes towrd ntiepileptic medictions differ between Cucsins nd Africn-Americns with epilepsy followed t tertiry epilepsy center nd if this is ssocited with more trditionl outcomes of cre, such s degree of seizure control. The results of this study should provide useful informtion when developing progrms to further nrrow the rcil disprities in tretment of ptients with epilepsy. 2. Methods This study ws pproved by the institutionl review bord of the University of Florid Helth Sciences Center/Jcksonville (UFHSCJ). Written consent ws obtined from ll ptients who prticipted in the study. We performed direct survey/interview of ptients followed t the UFHSCJ Comprehensive Epilepsy Progrm (CEP) from April to July This Level 4 epilepsy center is locted in downtown Jcksonville, FL, USA, nd is mjor referrl center in the region. About 42% of ptients seen t UFHSCJ-CEP re mles, 58% re Cucsins, nd 31% re Africn-Americns. A significnt portion of ptients seen t UFHSCJ-CEP come from the indigent popultion, nd 40% of ptients re either uninsured, prt of the city's indigent cre progrm, or recipients of /$ see front mtter 2010 Elsevier Inc. All rights reserved. doi: /j.yebeh

2 R.E.D. Butist, D. Jin / Epilepsy & Behvior 20 (2011) Medicid/Medicid HMO progrms. About 5% of ptients hve undergone epilepsy surgery nd/or vgus nerve stimultor implnttion. To dte, there re more thn 3000 ptients in our epilepsy dtbse. Physicins from UFHSCJ serve s both primry neurologists nd subspecilists to their ptients. This llows inclusion in the study of brod vriety of ptients with epilepsy, rnging from those with esyto-control epilepsy to those with refrctory seizures. Only estblished dult ptients with epilepsy seen during their outptient clinic visit were considered for this study. For study purposes, only Cucsins nd Africn-Americns were considered for the study s other rces combined constituted only smll percentge of the ptient popultion. Subjects should not hve hd ny history of psychogenic nonepileptic seizures, should hve considered themselves to be their primry cregiver, nd should hve beeen ble to sign the consent form s well s complete the survey without ssistnce. We obtined the following informtion during the survey/interview (Supplementry Mteril see Appendix): 1. Demogrphic informtion. Age b. Gender c. Mritl sttus d. Rce e. Eductionl ttinment f. Annul household income g. Whether they drive h. Whether they receive disbility benefits i. Employment sttus 2. Disese-relted informtion. Age t seizure onset b. Seizure durtion c. Seizure frequency d. Whether they experience convulsions e. Whether they experience seizures while wke f. Number of AEDs they re currently tking g. Severity of side effects from their current AED regimen 3. Psychosocil dt. Neurologicl Institute Disorders Depression Inventory for Epilepsy (NIDDI-E) [11] b. Qulity of Life in Epilepsy-10 (QOLIE-10) [12] c. Beliefs bout Medicines Questionnire (BMQ) [13] We lso performed chrt review to determine the ptient's primry insurnce sttus nd epilepsy clssifiction. The NIDDI-E is brief test (six questions) tht cn be used to rpidly identify ptients who hve clinicl depression. This mesure removes the potentil effect of confounding vribles (such s mediction effects nd cognitive problems) tht influence the dignosis of depression in ptients with epilepsy. A score greter thn 15 hs sensitivity of 81%, specificity of 90%, nd positive predictive vlue of 62% for dignosing mjor depression [11]. The QOLIE-10 is short-form mesure derived from the widely used QOLIE-89 covering generl nd epilepsy-trgeted spects of physicl nd mentl helth s well s socil nd role functioning. The test ssesses helth relted qulity-of-life issues in ptients with epilepsy tht fll into three domins: (1) Mediction Effects, (2) Mentl Helth, nd (3) Role Functioning nd Seizure Worry. Test retest dt revel significnt Person's correltions for individul items (rnge, r= ), nd there re high negtive correltions with Profile of Mood Sttes Mood Scle, systemic toxicity, neurotoxicity, nd seizure frequency [12]. The BMQ is questionnire-bsed method for ssessing commonly held beliefs bout medicines. Eighteen sttements re sked regrding individul ttitudes towrd their own prescribed medictions (BMQ-S, 10 items) nd medicines in generl (BMQ-G, 8 items). These sttements re nswered cross 5-point Likert scle. The items on the BMQ-S reflect both ptient beliefs in the necessity of their prescribed medictions nd their concerns bout potentil dverse effects. In this study, we sked ptients to relte their responses to their seizure medictions. We obtined BMQ-S Necessity minus Concerns score, with higher scores indicting stronger ptient beliefs in the importnce of their seizure medictions [13]. High BMQ-S scores re generlly ssocited with good mediction dherence [8]. In contrst, responses cross the BMQ-G scle were summed. Higher BMQ-G scores correlte with ptient beliefs tht medictions in generl re hrmful nd overused by physicins. It lso reflects tendency to seek lterntive remedies [13] Sttisticl nlysis Sttisticl nlysis ws performed t 5% level of significnce using two-tiled test. Descriptive nd univrite nlysis ws performed using SPSS Version 15.0; binry logistic regression ws performed using Minitb 15. Rce ws the trget vrible in our study. The remining demogrphic, clinicl, nd psychosocil dt gthered during the survey/ interview were the predictor vribles. Using univrite nlysis, we determined those predictor vribles tht were significntly ssocited with rce. Testing for the equlity of mens for intervl vribles ws performed using ANOVA (with trnsformtion of dt, if necessry, to stisfy the ssumptions of ANOVA). Pirwise comprisons nd contrsts were mde using methods tht control for fmilywide type I error rtes (method of Bonferroni). Ordinl vribles were ssessed using the Mnn Whitney test, nd ctegoricl dt were nlyzed with the χ 2 test. We performed multivrite sttistics on significnt vribles identified by univrite nlysis (Pb0.05) to determine those tht retined their significnce in the simultneous context of other vribles. 3. Results More thn 80% of ptients who met the inclusion criteri nd were sked to prticipte completed the consent form. In ll, 111 consecutive consenting ptients took the survey/interview nd were included in the study. Tble 1 detils the chrcteristics of our study popultion. Seventy-four respondents were Cucsins; the rest were Africn-Americns. Respondents hd men ge of 41 yers, nd 44% were mles. The mjority of respondents hd no more thn high school eduction, nd 45% hd n nnul household income less thn $10,000. Most respondents did not operte motor vehicle. Forty-four percent of our respondents received disbility benefits, nd the mjority were not working. Thirty percent of respondents hd commercil insurnce/tricre, 26% were on Medicre, nd 16% were on the indigent cre progrm. The men ge t seizure onset ws 23 yers, nd men seizure durtion ws 18 yers. Most subjects hd fewer thn one seizure yer. The mjority of subjects experienced generlized tonic clonic seizures nd seizures while wke. Subjects were on vried number of seizure medictions, nd lthough 64% experienced side effects from their medictions, only 10% chrcterized their side effects s mjor problem. The men NIDDI-E nd QOLIE-10 scores were 13.9 nd 25.2, respectively. The men BMQ-S score ws 3.5, nd the men BMQ-G score ws Tble 2 outlines the ssocition between rce nd the vrious predictor vribles. There ws significnt ssocition between being Africn-Americn nd hving poorer seizure control (P =0.03). Nerly one-third of Africn-Americns hd more thn one seizure week. In contrst, only 11% of Cucsins hd more thn one seizure week. More thn third of Cucsins hd fewer thn one seizure yer, wheres only qurter of Africn-Americns hd fewer thn

3 54 R.E.D. Butist, D. Jin / Epilepsy & Behvior 20 (2011) Tble 1 Descriptive dt (n=111). Vrible Men (SD) or number (%) A. Demogrphic vribles Age, yers 41.2 (14.9) Mles 44 (36.4%) Mritl sttus Single 57 (47.1%) Mrried 39 (32.2%) Divorced 22 (18.2%) Widowed 3 (2.5%) Rce Cucsin 74 (61.2%) Africn-Americn, non-hispnic 37 (30.6%) Other 10 (8.2%) Highest eductionl level Less thn high school 22 (18.5%) High school, no college 43 (36.1%) Some college/ssocite's degree 43 (36.1%) Bchelor's/technicl degree 8 (6.7%) Grdute/postgrdute degree 3 (2.5%) Annul household income b$10, (45.2%) $10,000 $50, (37.4%) $50,000 $100, (14.8%) N$100,000 3 (2.6%) Drives motor vehicle 46 (38.3%) Receives disbility benefits 53 (44.2%) Work sttus Full-time 21 (17.5%) Prt-time 11 (9.2%) Unemployed nd looking for work 25 (20.8%) Unemployed nd not looking for work 63 (52.5%) Insurnce type Uninsured 14 (13%) Indigent cre progrm 17 (16%) Medicid 14 (13%) Medicre 28 (26%) Commercil insurnce/tricre 33 (30%) Other 3 (3%) B. Clinicl vribles Age t seizure onset, yers 22.9 (16.8) Seizure durtion, yers 18.4 (15.2) Seizure frequency More thn once week 21 (17.5%) Less thn weekly but t lest once month 11 (9.2%) Less thn monthly but t lest once yer 25 (20.8%) Less thn once yer 63 (52.5%) Currently experiences convulsions 80 (66.7%) Hs seizures while wke 98 (81.0%) Epilepsy clssifiction b Locliztion-relted, cryptogenic 73 (66%) Locliztion-relted, symptomtic 16 (15%) Generlized, idiopthic 17 (16%) Undetermined 2 (2%) Sitution relted 2 (2%) Number of AEDs currently tken None 2 (1.7%) One 47 (38.8%) Two 44 (36.4%) More thn two 28 (23.1%) Side effects from current AED regimen None 55 (45.8%) Minor inconvenience 63 (44.2%) Mjor problem 12 (10%) C. Psychosocil vribles Test scores Neurologicl Institute Disorders Depression 13.9 (4.2) Inventory for Epilepsy Qulity of Life in Epilepsy 10 Inventory 25.2 (7.1) Beliefs About Medicines Questionnire Specific 3.5 (5.5) (Necessity minus Concerns) Beliefs About Medicines Questionnire Generl 20.6 (5.3) Missing dt not included in nlysis. b Interntionl Legue Aginst Epilepsy Tble 2 Chrcteristics of Cucsin nd Africn-Americn individuls with epilepsy. Men (SD) or number (%) P vlue Cucsins Africn- Americns Number of subjects Age 40.3 (15.1) 42.9 (14.6) 0.4 b Mles 29 (39%) 13 (35%) 0.69 c Mritl sttus 0.51 c Single 37 (50%) 16 (43%) Mrried 21 (28%) 13 (35%) Divorced 15 (20%) 6 (16%) Widowed 1 (1%) 2 (5%) Highest eductionl level 0.6 d Less thn high school 13 (18%) 6 (17%) High school, no college 28 (38%) 12 (33%) Some college/ssocites degree 27 (37%) 14 (39%) Bchelor's/technicl degree 4 (5%) 3 (8%) Grdute/postgrdute degree 2 (3%) 1 (3%) Annul household income 0.89 d b$10, (47%) 16 (47%) $10,000 $50, (37%) 13 (38%) $50,000 $100,000 9 (12%) 5 (15%) N$100,000 2 (3%) 0 Drives motor vehicle, yes 29 (39%) 13 (35%) 0.67 c Receives disbility benefits, yes 31 (42%) 19 (51%) 0.35 c Work sttus 0.24 c Full-time 12 (16%) 6 (16%) Prt-time 9 (12%) 1 (3%) Unemployed nd looking for work 13 (17%) 11 (30%) Unemployed nd not looking for work 40 (54%) 19 (51%) Insurnce type Uninsured 8 (11%) 6 (17%) 0.96 c Indigent cre progrm 11 (15%) 6 (17%) Medicid 9 (12%) 5 (14%) Medicre 20 (27%) 8 (22%) Commercil Insurnce/Tricre 23 (32%) 10 (28%) Other 2 (3%) 1 (3%) Age t seizure onset, yers 20.9 (15.9) 26.8 (17.9) 0.06 b,e Seizure durtion, yers 19.5 (15.7) 16.1 (13.9) 0.34 b,e Seizure frequency 0.03 c More thn once week 8 (11%) 12 (32%) Less thn weekly but t lest once month 16 (22%) 7 (19%) Less thn monthly but t lest once yer 25 (34%) 9 (24%) Less thn once yer 25 (34%) 9 (24%) Experiences convulsions 49 (66%) 22 (61%) 0.6 c Hs seizures while wke 60 (81%) 31 (83%) 0.73 c Epilepsy clssifiction f Locliztion-relted, cryptogenic 43 (58%) 30 (83%) 0.08 c Locliztion-relted, symptomtic 13 (18%) 3 (8%) Generlized, idiopthic 15 (20%) 2 (6%) Undetermined 1 (1%) 1 (3%) Sitution relted 2 (3%) 0 Number of AEDs currently tken 0.76 d None 1 (1%) 1 (3%) One 28 (38%) 14 (38%) Two 31 (42%) 12 (32%) More thn two 14 (19%) 10 (27%) Side effects from current AED regimen 0.82 d None 34 (46%) 15 (42%) Minor inconvenience 32 (43%) 18 (50%) Mjor problem 8 (11%) 3 (8%) Test scores Neurologicl Institute Disorders Depression 40.3 (15.1) 42.9 (14.6) 0.78 b Inventory for Epilepsy Qulity of Life in Epilepsy (7%) 26 (17.9) 0.41 b Beliefs About Medicines Questionnire 4.4 (5) 1.6 (6.1) 0.01 b Specific (Necessity minus Concerns) Beliefs bout Medicines Questionnire Generl 19.8 (4.9) 22.2 (5.8) 0.02 b b c d e f Missing dt not included in nlysis. ANOVA. χ 2 test. Kruskl Wllis test. Squre-root trnsformtion. Interntionl Legue Aginst Epilepsy, 1989.

4 R.E.D. Butist, D. Jin / Epilepsy & Behvior 20 (2011) yerly seizures. Compred with Cucsins, Africn-Americns hd significntly lower BMQ-S scores (men score=1.6 (SD 6.1) for Africn-Americns vs 4.4 (SD 5) for Cucsins, P=0.01). Africn- Americns lso hd significntly higher BMQ-G scores (men score=22.2 (SD 5.8) for Africn-Americns vs 19.8 (SD 4.9) for Cucsins, P=0.02). We performed binry logistic regression on predictor vribles tht were significnt on univrite nlysis. Of these, only seizure frequency remined independently ssocited with rce (P=0.041); BMQ-S (P=0.075) nd BMQ-G (P=0.558) scores were not independently ssocited with rce (Tble 3). Using seizure frequency s the trget vrible, we performed ordinl logistic regression with rce nd BMQ-S nd BMQ-G scores s predictor vribles. Both rce (P=0.037) nd BMQ-G scores (P=0.022) were independently ssocited with seizure frequency, wheres BMQ-S scores (P=0.335) were not (Tble 4). 4. Discussion The results of our study indicte tht compred with Cucsins, Africn-Americns hve poorer seizure control nd this significnce is mintined even on multivrite nlysis. Africn-Americns lso hve significntly lower BMQ-S nd higher BMQ-G scores, lthough this significnce is not sustined on multivrite nlysis. The ssocition between rce nd seizure control hs not been firmly estblished. In study of peditric ptients, seizure frequency ws found not to be significntly different cross rcil lines [14]. However, other studies hve shown tht compred with Cucsins, Africn-Americns hve lower chnce of receiving epilepsy surgery [15 17] nd generlly poorer surgicl outcomes [15]. This is the first study to relte scores on the BMQ with rce in group of individuls with epilepsy. Compred with Cucsins, Africn-Americns hd both lower BMQ-S nd higher BMQ-G scores, reflecting n incresed tendency to view medicines s both hrmful nd ddictive, nd to hve incresed relince on nontrditionl forms of heling [13]. This disprity in BMQ scores ws seen even though the rces were comprble cross ge, gender, nd eductionl nd income levels. The lower BMQ-S score is concerning nd, in other chronic disese sttes, hs been ssocited with poor mediction dherence [13]. The resons for rcil disprities in ttitudes towrd ntiepileptic medictions mong Africn-Americns need to be investigted further. Using focus group, Swrztruber nd collegues [18] showed tht Africn-Americn ptients with epilepsy hve high degree of mistrust Tble 3 Binry logistic regression of vribles ssocited with rce. Vrible B Significnce Odds rtio 95% CI for odds rtio Constnt Seizure frequency BMQ-S score BMQ-G score Vribles with P 0.05 on univrite nlysis were included. Tble 4 Ordinl logistic regression of vribles ssocited with seizure frequency. Vrible B Significnce Odds rtio 95% CI for odds rtio Constnt (1) 4.6 b0.001 Constnt (2) Constnt (3) Rce BMQ-S score BMQ-G score in their helth cre providers. It hs lso been shown tht generl lck of knowledge bout epilepsy still exists mong Africn-Americns [3]. An obvious question is whether the decresed trust in the use of ntiepileptic medictions results in poorer seizure control mong Africn-Americns. Using ordinl regression with seizure frequency s the trget vrible, our study indictes tht rce s well s BMQ-G score is n independent predictor of seizure frequency, indicting tht mediction ttitudes influence seizure control. Another issue tht needs to be ddressed is the reltionship between ttitudes towrd medictions nd mediction dherence. This ws not directly ddressed in our study. In study of peditric ptients, non- Cucsins, 90% of whom were Africn-Americn, hd significntly higher levels of undetectble nticonvulsnt blood levels, compred with Cucsins [14]. However, vribles other thn mediction ttitudes, such s seizure type nd finncil resources [3], could certinly influence dherence. This study hs severl limittions. Our ptients were seen t Level 4 epilepsy center in northest Florid nd were typicl of n indigent, urbn popultion. Although seizure frequency vried widely mong our ptients, the demogrphic nd clinicl profiles of our study popultion my differ from those of other epilepsy progrms. Second, dt were obtined from ptient survey nd were not vlidted using medicl records or ctul seizure diries. Lstly, other vribles of interest, such s mediction dherence, were not included in this study. The differences in seizure control mong the rces studied reflect dissimilr disese burdens, which is mesure of helth disprity. The discrepncy in mediction ttitudes indictes tht there re vrying helth dmging behviors nd is potentil determinnt of helth disprity [19]. Although our study sheds some light on the disprities tht still exist in epilepsy cre, it lso presents new venues for further investigtion. Previous studies hve shown tht orgnized progrms cn significntly improve ptients ttitudes towrd medictions. A depression cre progrm tht eductes ptients bout the disorder nd the use of ntidepressnt therpy hs significntly enhnced ptients ttitudes towrd the use of ntidepressnts [20]. The use of phrmcist-led ptient eductionl progrm lso significntly improved ptients beliefs bout medictions s well s mediction dherence cross wide rnge of medicl conditions [21]. Developing progrms tht successfully improve ttitudes towrd medictions of minority ptients should help to decrese helth disprities nd help relize the gols of Helthy People 2010 [22]. Appendix A. Supplementry dt Supplementry dt to this rticle cn be found online t doi: /j.yebeh References [1] Hussin SA, Hut SR, Lipton RB, Derby C, Mrkowitz AY, Shinnr S. Incidence of epilepsy in rcilly diverse, community-dwelling, elderly cohort: results from the Einstein Aging Study. Epilepsy Res 2006;71: [2] Chndr V, Bhruch NE, Schoenberg BS. Deths relted to epilepsy in the United Sttes. 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