multicultural challenges in epilepsy

7
Review Multicultural challenges in epilepsy Emanuele Bartolini a,b , Gail S. Bell a , Josemir W. Sander a,c, a Department of Clinical and Experimental Epilepsy, UCL Institute of Neurology, and the National Hospital for Neurology and Neurosurgery, Queen Square, London WC1N 3BG, UK b Department of Neuroscience, University of Pisa, Pisa, Italy c SEIN Epilepsy Institute in the Netherlands Foundation, Achterweg 5, 2103 SW Heemstede, The Netherlands abstract article info Article history: Received 8 December 2010 Revised 24 December 2010 Accepted 27 December 2010 Available online 18 February 2011 Keywords: Epilepsy Multicultural Prognosis Treatment gap Traditional beliefs Epilepsy is a common neurological condition throughout the world. Its care involves medical expertise, but may also bring different cultural challenges. We discuss clinical, social and psychological outcomes in different cultural settings. We point out differences and similarities in epilepsy epidemiology (etiology and risk factors, prognosis, and natural history), disparities in care and health services, and cultural inuences and traditional beliefs, with special respect to practical issues and possible transcultural misunderstandings. We also discuss the relevance of multicultural issues to clinicians working in developed countries. © 2011 Elsevier Inc. All rights reserved. 1. Introduction It is likely that more than 60 million people worldwide have epilepsy [1]. The World Health Organization (WHO) estimated that nearly 80% of the burden of epilepsy worldwide is borne by resource- poor countries [2]. Low- and middle-income countries (LAMIC) share some factors that hinder epilepsy care: poverty, social and political instability, widespread stigma, myths and misconceptions, inadequate health care facilities, and a severe shortage of epilepsy specialists [3]. Throughout the world, neurologists regularly advise people with epilepsy whose ethnic, linguistic, and social backgrounds are different from their own and who may have different cultural beliefs about their condition. The risk factors for their epilepsy may be different, and they may have had different levels of care previously. Patchy knowledge and lack of comprehension of these cultural and geographic aspects may result in misunderstanding and inadequate care. 2. Methods Three main issues are considered important background informa- tion in this review: epidemiology (including risk factors and etiology, prognosis, and natural history), disparities in care and health services, and cultural inuences and traditional beliefs. We discuss the rele- vance of this information to everyday practice. Our aim is to raise awareness of the importance of sociocultural knowledge in epilepsy, to improve care and health provision. We searched PubMed with the algorithm ([epilepsy OR seizures], [epilepsy AND (etiology OR epidemiology OR treatment OR stigma)], [epilepsy AND (Africa OR Asia OR Latin America OR world]) and also explored professional websites about epilepsy. Other articles were found by manual searching and review of the archives of the authors. 3. Background 3.1. Epidemiology 3.1.1. Prevalence The prevalence of active epilepsy has usually been estimated as between 4 and 10/1000 people in many different countries [412]. Most large-scale studies in LAMIC have reported the prevalence of active epilepsy to be between 6 and 10/1000 [4,11,13,14], with higher rates usually found in rural areas than in urban areas [11,1315]. Lifetime prevalence is higher than the prevalence of active epilepsy, and it is generally agreed that up to 5% of a population will experience at least one nonfebrile seizure at some point in life [4,16]; this nding applies to both industrialized countries and LAMIC. 3.1.2. Incidence In high-income countries the annual incidence usually lies between 40 and 70/100,000 [14,16]. The incidence is usually higher in resource- poor countries, where it is often reported as greater than 100/100,000 [11,14,16]. Annual incidence in Asia (2960/100,000) is similar to that in Western countries, but the reported incidence is much higher in Epilepsy & Behavior 20 (2011) 428434 Corresponding author. Department of Clinical and Experimental Epilepsy, National Hospital for Neurology and Neurosurgery, Queen Square, London WC1N 3BG, UK. Fax: +44 20 3108 0115. E-mail address: [email protected] (J.W. Sander). 1525-5050/$ see front matter © 2011 Elsevier Inc. All rights reserved. doi:10.1016/j.yebeh.2010.12.045 Contents lists available at ScienceDirect Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh

Upload: emanuele-bartolini

Post on 31-Oct-2016

218 views

Category:

Documents


2 download

TRANSCRIPT

Page 1: Multicultural challenges in epilepsy

Epilepsy & Behavior 20 (2011) 428–434

Contents lists available at ScienceDirect

Epilepsy & Behavior

j ourna l homepage: www.e lsev ie r.com/ locate /yebeh

Review

Multicultural challenges in epilepsy

Emanuele Bartolini a,b, Gail S. Bell a, Josemir W. Sander a,c,⁎a Department of Clinical and Experimental Epilepsy, UCL Institute of Neurology, and the National Hospital for Neurology and Neurosurgery, Queen Square, London WC1N 3BG, UKb Department of Neuroscience, University of Pisa, Pisa, Italyc SEIN – Epilepsy Institute in the Netherlands Foundation, Achterweg 5, 2103 SW Heemstede, The Netherlands

⁎ Corresponding author. Department of Clinical and EHospital for Neurology and Neurosurgery, Queen SquFax: +44 20 3108 0115.

E-mail address: [email protected] (J.W. Sander)

1525-5050/$ – see front matter © 2011 Elsevier Inc. Aldoi:10.1016/j.yebeh.2010.12.045

a b s t r a c t

a r t i c l e i n f o

Article history:Received 8 December 2010Revised 24 December 2010Accepted 27 December 2010Available online 18 February 2011

Keywords:EpilepsyMulticulturalPrognosisTreatment gapTraditional beliefs

Epilepsy is a common neurological condition throughout the world. Its care involves medical expertise, butmay also bring different cultural challenges. We discuss clinical, social and psychological outcomes indifferent cultural settings. We point out differences and similarities in epilepsy epidemiology (etiology andrisk factors, prognosis, and natural history), disparities in care and health services, and cultural influences andtraditional beliefs, with special respect to practical issues and possible transcultural misunderstandings. Wealso discuss the relevance of multicultural issues to clinicians working in developed countries.

xperimental Epilepsy, Nationalare, London WC1N 3BG, UK.

.

l rights reserved.

© 2011 Elsevier Inc. All rights reserved.

1. Introduction

It is likely that more than 60 million people worldwide haveepilepsy [1]. The World Health Organization (WHO) estimated thatnearly 80% of the burden of epilepsy worldwide is borne by resource-poor countries [2]. Low- and middle-income countries (LAMIC) sharesome factors that hinder epilepsy care: poverty, social and politicalinstability, widespread stigma,myths andmisconceptions, inadequatehealth care facilities, and a severe shortage of epilepsy specialists [3].

Throughout the world, neurologists regularly advise people withepilepsy whose ethnic, linguistic, and social backgrounds are differentfrom their own and who may have different cultural beliefs abouttheir condition. The risk factors for their epilepsy may be different,and they may have had different levels of care previously. Patchyknowledge and lack of comprehension of these cultural andgeographic aspects may result in misunderstanding and inadequatecare.

2. Methods

Three main issues are considered important background informa-tion in this review: epidemiology (including risk factors and etiology,prognosis, and natural history), disparities in care and health services,and cultural influences and traditional beliefs. We discuss the rele-vance of this information to everyday practice. Our aim is to raise

awareness of the importance of sociocultural knowledge in epilepsy,to improve care and health provision.

We searched PubMed with the algorithm ([epilepsy OR seizures],[epilepsy AND (etiology OR epidemiology OR treatment OR stigma)],[epilepsy AND (Africa OR Asia OR Latin America OR world]) and alsoexplored professional websites about epilepsy. Other articles werefound by manual searching and review of the archives of the authors.

3. Background

3.1. Epidemiology

3.1.1. PrevalenceThe prevalence of active epilepsy has usually been estimated as

between 4 and 10/1000 people in many different countries [4–12].Most large-scale studies in LAMIC have reported the prevalence ofactive epilepsy to be between 6 and 10/1000 [4,11,13,14], with higherrates usually found in rural areas than in urban areas [11,13–15].Lifetime prevalence is higher than the prevalence of active epilepsy,and it is generally agreed that up to 5% of a population will experienceat least one nonfebrile seizure at some point in life [4,16]; this findingapplies to both industrialized countries and LAMIC.

3.1.2. IncidenceIn high-income countries the annual incidenceusually lies between

40 and 70/100,000 [14,16]. The incidence is usually higher in resource-poor countries, where it is often reported as greater than 100/100,000[11,14,16]. Annual incidence in Asia (29–60/100,000) is similar to thatin Western countries, but the reported incidence is much higher in

Page 2: Multicultural challenges in epilepsy

Table 2Examples of cultural differences in dissociative seizures.

Turkey: Dissociative seizures are seldom reported by men, as culturally they areconsidered a sign of weakness [144].

United Arab Emirates: Conversion symptoms may be the best way of attractingsympathy for women living under many restrictions. In Arab society, men havemore advantages and thus do not need to adopt a sick role [145,146].

India: Dissociative seizures affect predominantly housewives and female students,coming from rural areas, with low socioeconomic conditions and pooreducational background [147].

South Africa: Dissociative seizures may be concomitant with epilepsy inneurocysticercosis. The clinical differentiation is difficult if long-term video/EEG monitoring techniques are not available [148].

Argentina: Long-term video/EEG monitoring has been available only since 1990.Economic problems may limit the implementation of adequate diagnostictechniques [149].

429E. Bartolini et al. / Epilepsy & Behavior 20 (2011) 428–434

sub-Saharan Africa (63–158/100,000) and Latin America (78–190/100,000) [17–19] (Table 1).

3.1.3. Incidence, prevalence, and ethnicityAssociations between ethnicity and epilepsy remain largely un-

known. Studies from the United States suggest higher incidence andlifetime prevalence in African-Americans than in Caucasian Americans[20–22]. Lower standards of perinatal care might be relevant, but thisneeds to be formally assessed in these settings. People who are sociallyand economically deprivedmay bemore liable to develop epilepsy [23],and it is likely that African-Americans in these settings are in moredeprived strata of society. A lower prevalence has been reported inSouth Asian populations living in the United States and the UnitedKingdom [24,25]; this has not been confirmed in second-generationimmigrants [13] and may reflect differential migration as people withepilepsymay be less likely to migrate. Age and gender distributionmayalso differ between people coming from LAMIC and those from high-income countries. In many ethnic groups, such as people from Asia orsub-Saharan Africa, the peak of incidence in the older age groupsobserved inWestern countriesmay not be seen, probably because of thedifferent demographic makeup of the populations [16,18,19]. In sub-SaharanAfrica a higher prevalence of epilepsy inmales is reported, but ithas been suggested that young women and their families may hideepilepsy so that they couldmarry [19]. A door-to-door prevalence studyfrom Sicily also suggested that teenage girls, and others, may concealtheir epilepsy [26]. A high index of suspicion for epilepsy should alwaysbe kept inmind. The differential diagnosis of seizuresmust consider andexclude nonepileptic phenomena of a psychological nature (e.g.,psychogenic seizures or dissociative seizures). Information on this isscarce, but there are some suggestions that dissociative seizures couldbe culture bound and difficult to assess, particularly where diagnosticfacilities are poor (see Table 2).

3.1.4. Risk factors and etiologiesThe range of risk factors in the epilepsies varies according to

geographic location [16]. These differences may be due to environ-mental factors or genetic susceptibility. In general, most population-based studies from North America, Europe, and Africa have reportedan identified cause in 14–39% of all cases; in the majority of casesthere is no identifiable cause [27] (Table 3). In high-income countries,in people in whom the probable etiology is identified, epilepsy iscaused mainly by cerebrovascular accidents, head trauma, braintumors, congenital problems, and genetic abnormalities [28,29].These factors may, of course, also be responsible for epilepsy inpeople from LAMIC, but other risk factors, often not seen in high-income countries, must also be considered. Infections and infestationsof the central nervous system are frequent in LAMIC andmay be partlyresponsible for the higher incidence of epilepsy seen in some areas ofthese countries. The clinician may need to ask specifically about visitsor periods of residence abroad in people with a new onset of seizures.

3.1.4.1. Neurocysticercosis. Neurocysticercosis, caused by brain infes-tation with Taenia solium, the pork tapeworm, is considered the main

Table 1Incidence of recurrent unprovoked seizures in population-based studies in differentcountries.

Region Reference Incidence (per 100,000)

United States Zarrelli et al. [138] 52United Kingdom Cockerell et al. [139] 23Italy Granieri et al. [140] 33Ecuador Placencia et al. [11] 122Chile Lavados et al. [141] 113China Wang et al. [142] 29Tanzania Rwiza et al. [12] 73Uganda Kaiser et al. [143] 156

cause of acquired epilepsy in many parts of LAMIC [30]. Cysticercosisis often present in areas where hogs are raised, but it may also occuroutside such areas. Pigs are the usual intermediate host for T. solium,whereas humans are the definitive host. Humans may become theintermediate host by ingesting foodstuff or water contaminated withhuman feces containing eggs from T. solium; thus, poor sanitationfacilitates transmission of T. solium. The parasite may then becomeestablished in subcutaneous tissue, muscle, or brain (causingneurocysticercosis) [31]. Neurocysticercosis is widespread in Asia(e.g., India, Nepal, Bali, Papua and Sulawesi in Indonesia, parts ofVietnam and China) [18], Africa (apart from the Muslim areas)[19,31,32], and Latin America (e.g., Peru, Ecuador, Mexico) [33–36]. Inendemic countries, cysticercosis is prevalent in urban and middle-class areas as well as in rural areas. Seizures are the most frequentsymptom of neurocysticercosis, especially in those with parenchymalcysts [37]. Symptoms usually result from a host inflammatoryresponse after parasite death. Solitary enhancing CT lesions are acommon manifestation, and the definitive diagnosis is often formedon the basis of resolution or calcification over months withconservative treatment. Neoplasms such as glioblastoma multiformemay present with clinical and radiological signs similar to those ofneurocysticercosis [38]. Clinical history and origin in or recent travelto endemic areas may be the clue to an early diagnosis. There is noclear evidence that cysticidal treatment offers reliable benefit [39].Conservative treatment is frequently effective, as antiepilepticmonotherapy often leads to seizure freedom [30]. Although it iscrucial to consider the diagnosis of cysticercosis in people whooriginated from, or have traveled to, areas where neurocysticercosis isendemic, it is also important to consider the possibility that thediagnosis may, indeed, be an alternative, including neoplasms.

3.1.4.2. Malaria.Malaria is one of themost commonparasitic infectionsin the world. It is caused by the protozoan Plasmodium sp. The highestlevels of endemicity are in tropical regions, especially sub-SaharanAfrica, possibly parts of South and Southeast Asia (e.g., India, Burma,Indonesia, Pakistan, Cambodia, Papua New Guinea, Bangladesh), andSouth America [40,41]. The parasite is transmitted by the bite of thefemalemosquito of the genus Anophele. Plasmodium falciparum causesthe most severe form of malaria (after 6–20 days of incubation), ofteninvolving the central nervous system. Seizures are common manifes-tations of the acute stage of infection and can occur in the context of

Table 3Etiology of epilepsy in population-based studies in different countries.

Region Reference Symptomatic (%) Unknown (%)

United States Hauser et al. [150] 24 76Italy Granieri et al. [140] 40 60Chile Lavados et al. [141] 30 70India Bharucha et al. [151] 23 77Tanzania Rwiza et al. [12] 11 88

Page 3: Multicultural challenges in epilepsy

430 E. Bartolini et al. / Epilepsy & Behavior 20 (2011) 428–434

cerebral malaria, with fever and impairment of consciousness. Aseizure in a person with a febrile disease, recently coming from atropical endemic region, calls for the suspicion of malaria. The risk ofmortality or neurological sequelae, including epilepsy, is very high[42–45].

3.1.4.3. Human immunodeficiency virus. Human immunodeficiencyvirus infection is a risk factor for epilepsy. Seizures in people with HIVinfection can occur through direct invasion of the central nervoussystem or as a result of opportunistic infections (e.g., cryptococcosis,herpes simplex virus, toxoplasmosis, tuberculosis) [30]. AIDS affectssub-Saharan Africa more than any other part of the world.Management of antiepileptic therapy can be troublesome. Peoplewith epilepsy from LAMIC frequently take enzyme-inducing AEDs;these can reduce the half-life of antiretroviral drugs such asnevirapine, a component of Triomune, one of the few multidrugregimens for HIV available in sub-Saharan Africa [46]. By contrast, HIVprevalence in high-income countries is lower and non-enzyme-inducing AEDs are more readily available [47,48]. Knowledge of theorigin of the individual and understanding of the social and culturalbackgroundmay ease AEDmanagement and choice, particularly if theperson is likely to return to a resource-poor setting.

3.1.4.4. Other infections. Clinicians should also consider more rare riskfactors for seizures such as Japanese encephalitis, schistosomiasis,toxoplasmosis, toxocariasis, African trypanosomiasis, and paragoni-miasis [48–53]. The Japanese encephalitis flavivirus is endemic inmost of China, Southeast Asia, and the Indian subcontinent; 65% ofpeople with Japanese encephalitis have acute symptomatic seizuresand 13% develop chronic epilepsy [48,49]. Schistosoma japonicum,endemic in Southeast Asia, may cause seizures as a symptom of acutecerebral schistosomiasis or as a consequence of chronic schistosomi-asis [49]. Toxoplasmosis may be an opportunistic infection and maycause seizures, with a relevant causal impact where AIDS is endemic[49]. Human toxocariasis is caused by larval stages of Toxocara canis,the common roundworm of dogs, and although there is no directevidence that central nervous system invasion by the larvae causesepilepsy, a strong association between seropositivity and focalepilepsy has been observed [52,54,55]. Trypanosoma brucei is endemicin many countries of sub-Saharan Africa; chronic trypanosomiasis ischaracterized by progressive neurological involvement, includinggeneralized and focal seizures [49]. Paragonimus westermani isprevalent in the Far East, Southeast Asia, some parts of Africa, andSouth America; cerebral paragonimiasis is often associated with focalseizures [49].

3.1.4.5. Noninfectious risk factors. Other risk factors are important inthe development of epilepsy in resource-poor settings. Perinatalinjuries cause a serious burden in LAMIC; in sub-Saharan Africa it hasbeen estimated that perinatal causes, such as obstetric injuries,neonatal hypoxia, and watershed cerebral ischemia, account for morethan a third of seizures [19]. Multiparity, prematurity, and maternalinfections aggravate the situation where home births withoutprofessional aid are frequent [53]. Perinatal stroke seems morefrequent in LAMIC and is sometimes associated with epilepsy; themain risk factors for perinatal stroke are maternal disorders (e.g.,preeclampsia, coagulation disorders); placental disorders (e.g., pla-cental abruption, placental thrombosis); blood disorders (e.g., factor VLeiden mutation, protein S deficiency, protein C deficiency); andinfectious disorders (meningitis, systemic infections) [56].

Genetic factors should also be considered in people coming fromLAMIC, as familial aggregation has been observed in India [57,58], Laos[59], China [60], and sub-Saharan Africa [19], and consanguinity iscommon in many African communities and in certain Asian cultures[53,61]. Roma/Gypsy communities constitute cultural and frequentlyinbred genetic isolates. Different phenotypes of idiopathic generalized

epilepsy, focal epilepsy, and mosaicism SCN1A/Dravet syndrome witha familial inheritance have been described in Roma/Gypsy families[62–64].

3.1.5. Prognosis and natural historyResource-poor countries are important in understanding the

natural history of epilepsy, particularly with respect to treatment.Recurrence rates after a first unprovoked seizure and after AEDwithdrawal are similar in low- and high-income countries [65,66].Studies in Ecuador have reported a substantial proportion of people inlong-term remission without treatment, and data from China seem tosuggest a similar trend [67,68].

Despite an overall good prognosis, epilepsymay be associatedwithsevere consequences. Where health resources are lacking, as in sub-Saharan Africa, people with epilepsy may experience frequent,uncontrolled seizures in an unsafe physical environment, leading tosevere burns, drowning, and fractures [69,70]. Status epilepticus is notrare in LAMIC and is often associated with abrupt drug withdrawal inpeople with epilepsy [71]. There are shortcomings in knowledgeabout overall epilepsy mortality in resource-poor countries. Ifmortality is high, this could explain the gap between the highincidence and relatively low prevalence of active epilepsy. Although inthe United Kingdom standardized mortality ratios (SMRs) between2.6 and 3.0 have been reported in people with epilepsy [72,73], arecent study found a SMR of 3.9 among 2455 people with epilepsy atthe primary health care level in rural China [74]. High mortality rateshave also been reported in other resource-poor regions of the world:28.9 per 1000 person-years in a rural area of Cameroon [75] and 31.6per 1000 person-years in rural central Ethiopia [76].

3.2. Disparities in care and health services

Neurology provision varies from one or two neurologists per 20,000to one per 100,000 people inWestern countries, whereasmany parts ofAsia, Latin America, and Africa have no neurologists at all [77]. This isparticularly the case in rural areas, where nearly two-thirds of people inresource-poor countries reside [78]. The median number of hospitalbeds for epilepsy care per 100,000 population in LAMIC is low (0.05 inSoutheast Asia, 0.46 in the Western Pacific area, 0.55 in Africa)compared with Europe (1.65) [79]. People with epilepsy have accessto specialist care in 89% of high-income countries, but only 56% of low-income countries, where diagnostic instruments are also scarce. EEGservices are available in three-quarters of LAMIC, but not unusuallysetups are managed and run by personnel with no formal training. MRIis available in only 21% of African countries, 48% of Western Pacificcountries, and 56% of Southeast Asian countries [80]. There is asubstantial treatment gap, as an important proportion of people withepilepsy in resource-poor countries never receive appropriate treat-ment. The treatment gap is defined as the number of peoplewith activeepilepsy not on treatment or on inadequate treatment, expressed as apercentage of the total number with active epilepsy [81,82]. A recentmeta-analysis found an overall treatment gap of 56% in resource-poorcountries; the treatment gap was high in Asia (64%), Latin America(55%), and Africa (49%), with higher rates in rural (73%) than in urban(47%) populations [83]. Most AEDs are available in Asia, but second-generation AEDs are often prohibitively expensive [18]. In Africa, AEDavailability depends also on cultural heritage; in French-speaking areasphenobarbital is prescribed for 65–85% of people with treated epilepsy;in English-speaking countries, phenytoin is the most prescribed AEDand carbamazepine is prescribed for 5–20% of those treated [82]. Asurgical treatment gap also exists; in 2006, epilepsy surgery wasavailable in only 13% of LAMIC, compared with 66% of high–incomecountries [80].

It may be appropriate to consider further diagnostic workup in aperson whose original diagnosis was made in a low- or middle-income country, as more refined investigations may facilitate an

Page 4: Multicultural challenges in epilepsy

431E. Bartolini et al. / Epilepsy & Behavior 20 (2011) 428–434

accurate diagnosis. Similarly, if seizures are not well controlled onAEDs prescribed in LAMIC, the clinician could consider other AEDs,always taking into consideration whether the individual is likely toreturn to another country and the availability and affordability of theAEDs there.

3.3. Cultural influences and traditional beliefs

Traditional, non-biomedical views are considered to have a stronginfluence on the differences observed in epilepsy care [82]. Ethnicminorities residing in Western countries may keep traditional viewsintermixed with scientific conceptions. Physicians must consider thisin establishing a therapeutic alliance with the person. Religious beliefscan exert positive influences on health by acting as a source ofinspiration, or negative influences when they are linked with guilt orresult in a sense of fatalism. A fatalist attitude considering epilepsy asa divine curse has been described in some South Asian communities inthe United Kingdom [84]. Some cultures, as in the Voodoo religion orin the rural Indian subcontinent, may believe people with epilepsy arepossessed by spirits [84,85]. Hinduism and Sikhism endorse the beliefthat illness is usually a punishment for misdeeds perpetrated inprevious lives [84]. Religious prescriptions may also translate intopractical issues on therapeutic adherence and drug management.During Ramadan, the ninth month of the Islamic lunar calendar, adultMuslims should not take oral drugs, nor food or water, between dawnand sunset. Ramadan can occur in any of the four seasons; thus, thefasting period may vary from 11 to 18 hours. People with chronicdiseases often fast even though they are permitted not to by Islamicconvention. Adjusting the drug intake to the life rhythm of Ramadan isoften not practical [86]. This is a particular problem for medicationswith a narrow therapeutic index such as some AEDs, which should betaken at regular intervals to maintain constant blood levels. Changesin circadian rhythms, drug regimen, pharmacokinetics, and pharma-codynamics of AEDs may lead to an overall increase in seizurefrequency [87].

Traditional beliefs are sometimes the source of discriminatoryattitudes. A widespread prejudice considers epilepsy as an infectiousdisease or as a mental illness, and people with epilepsy may be leftalone to avoid contagion. This has been reported in many African andAsian countries [88–92]. Unconventional treatments are often mixedwith conventional medicine, and people with epilepsy may considereach as effective as the other. The Indian official health systemincludes some of the elements of the Muslim-derived Unani system ofmedicine; this includes use of purgatives, venesection, cleansingagents (Jadwar-Ood-E-Salaib and Khamir-E-Abresham), inducedsneezing, hot oil massage with Roghan-E-Surkh or E-Baboona, andbrain tonics such as Itherifal-Usta-Khudoos, Dawa-Ul-Misk, andMuatidil Jawahar Wali [93]. In Sub-Saharan Africa concoctions,scarifications, witch hunting, incantations, rituals, and ingestion ofhot herbal liquids can be considered useful remedies [91,94,95]. Iftreatment fails, many traditional healers refer the person to a hospital[91]. Co-operation with traditional healers may ease access to medicaltreatment for people with epilepsy in LAMIC [96]. In Tibet nearly 60%of individuals take traditional medicine [97]. People of South Asianorigin living in the United Kingdom have been reported to believe inWestern medicine, but also to consult with gurus (Hindus and Sikhs)or pirs (Muslims) visiting from the Indian subcontinent. Pirs mayadvise wearing amulets (taweez) containing verses from the Koran,usually around the neck or the arm, drinking blessedwater, or recitingfrom holy texts. Conventional medicine is deemed first choice, butpeople may also seek help from herbal practitioners (hakims), usuallyduring trips to visit relatives in Southeast Asia [84]. In China, Westernand traditional medicine are now practiced together, consideringAEDs as useful for treating seizures specifically, while Chinesemedicine is used as regulator of the person's constitution betweenseizures [98–101]. There is no evidence in favor of acupuncture

effectiveness, but this is seen as a means of “restraining the nerve,”and acupressure is seen as stopping seizures when they occur[98,102]. According to the WHO, integrating Western and traditionalmodels in the treatment of epilepsy can be useful [103].

Common lay terminology for epilepsy and seizures can suggestclues to the psychological background of people with epilepsy. InChina, particularly in rural areas, epilepsy is yang jiao feng (meaning“making a noise like a sheep”). In Vietnam it is described as dong kinh(“unstable nerve epilepsy”), phong giat (“wind-bitten seizure”), andkinh phong cap (“acute neurological wind-bitten”) [98]. In Arabiccountries and in Turkey epilepsy is often referred to as Saraa (“beingknocked down”) [104]. In Urdu it is calledMirgi (“small death”) [105].The Tzeltal Mayas, from Chapas, Mexico, call epilepsy tub tub ik'al(“person that breathes anxiously or shocking”) [106].

4. Discussion: How this should influence the Western neurologist

When assessing any person with epilepsy, it is always paramountto consider the whole person; for many people, of whatever culture,this may involve cultural and ethnic matters.

As seen above [23], the incidence of epilepsy seems to be higher inmore deprived populations. The reasons for this are not entirely clearbut the causes are likely to be multifactorial. People in poorer areasmay have inadequate or delayed access to medical services anddiagnostic facilities [23], and those of lower socioeconomic status maybe less likely to adhere to treatment regimens [103]. In the UnitedKingdom, AEDs are provided free of charge for people with epilepsy,but difficulties in accessing neurologists and pharmacies may hinderaccess to good care.

In some cultures it is thought shameful to have a family memberwith epilepsy [107]. In other cultures, epilepsy is seen as apunishment and not amenable to medical treatment [108]. Thus,treatment may be delayed, and individuals may already have sufferedthe consequences of uncontrolled seizures. We can hypothesize thatthe attempt to hide epilepsy to marry may involve stopping AEDs,with negative consequences. The clinicianmay need to emphasize theimportance of adherence to the treatment regimen and the possibleconsequences of not doing so.

The differential diagnosis of epilepsy may be complicated inpeople of different backgrounds. For example, malaria as a risk factorshould always be considered in someone presenting with seizureswho has been to a malarial area, particularly those areas endemic forPlasmodia falciparum. Treating the cause of the seizures, in this case, isparamount. If someone who has been in areas endemic forcysticercosis presents with the symptoms and signs of an enhancinglesion, all alternative diagnoses must also be considered unless theevidence for the diagnosis of neurocysticercosis is overwhelming.Noninfectious causes may also have different etiologies in peoplefrom LAMIC. It is therefore important that the diagnostic workup ofpeople with acute symptomatic seizures or epilepsy takes intoaccount the person's origins and travel to avoid misdiagnosis.

The possibility of a genetic origin should be considered, particu-larly in people from ethnic groups in which consanguinity is common.Investigators conducting genetic research in people coming fromresource-poor countries should, however, be wary lest the addition ofthe dimension of familial transmission of the disease could lead tofurther ostracism [58].

Possibly one of the most difficult areas is treatment with AEDs.People from most cultures may use alternative or complementaryremedies, and interactions have been identified between herbs andsome AEDs [109]. In addition, many people do not consider herbs orcomplementary remedies to be “drugs” and may not volunteer theinformation that they have taken them when asked about theirmedication intake [110]. Thus it is important always to ask individualswhether they take unconventional medicines when a medical historyis taken [111]. In people who are likely to return to another area of the

Page 5: Multicultural challenges in epilepsy

Table 4Epilepsy management during Ramadan.

•Both the Qur'an (holy book of Islam) and Hadith (Practices & Sayings of Holy ProphetMohammed) exempt Muslims from fasting during any illness if there is a risk toindividual health.

•People with epilepsy willing to fast need careful follow up.•Maintain regularity of drug intake (e.g., do not modify times of doses, number ofdoses, time span between doses, total daily dosage).

•Avoid sleep deprivation.•Keep fluid intake as constant as possible.•Injection or intravenous administration that is solely medical is allowed.

432 E. Bartolini et al. / Epilepsy & Behavior 20 (2011) 428–434

world where AEDs are less widely available, this should be consideredwhen prescribing.

Devout Muslims may wish to fast during Ramadan, even thoughconvention allows them not to do so. It is important to ask whether ornot people intend to fast, and to try to find some agreement that willnot jeopardize AED intake (see Table 4).

Few data are available on the transcultural aspects of dissociativeseizures, but there seem to be differences related to local culturalcontexts (Table 2).

5. Conclusions

Epilepsy is still a highly stigmatizing condition, especially inresource-poor countries [103,104]. In such settings epilepsy repre-sents a major public health and social problem, characterized by lackof prioritization and infrastructure support and by a treatment gap.Consideration must be given to the many preventable causes such asparasitic infections [7,104]. Adequate drug supplies must be providedfor the success of any epilepsy management program, but simplydelivering AEDs to resource-poor countries will not necessarilyreduce the treatment gap [112]. Epilepsy care can be addressed bytargeting preventable causes (e.g., parasitic infections) and througheducational interventions for health providers (including traditionalhealers), people with epilepsy, and the wider community [113–123].Pragmatic models of health delivery integrated into existing serviceshave been set up in several countries, leading to reduction of thetreatment gap [116,118,124–129].

Cultural aspects deeply influence health-seeking strategies. Super-natural beliefs may encourage people with epilepsy and their familiesto seek help from traditional healers [130,131]. This can delay access toWestern medicine by several years [131]. Stigma may hamper correctapproaches to coping with epilepsy. The acknowledgment of culturaland geographic differences is important to promote better de-stigmatization campaigns [132–135]. Seeking support from the familyis a common coping strategy, but is difficult when the family feelsshame for having a relative with epilepsy [98,136]. Emotions are oftenimportant for people with epilepsy, and they may express dissatisfac-tion if the medical team emphasizes medications rather thaneducation and comprehension [136,137]. Every intervention shouldbe based on the local perceptions and should consider socialconditions. Epilepsy imposes many challenges in a multiculturalsociety where people from different communities live together. Cross-cultural communication and understanding of different backgroundsof peoplewith epilepsy have become cornerstones of epilepsy care in amulticultural society.

Conflict of interest statement

None of the authors has any conflicts of interest in relation to thiswork to disclose.

Acknowledgements

This work was supported by the Epilepsy Society. It was partlyundertaken at UCLH/UCL, which receives a proportion of funding fromthe Department of Health's NIHR Biomedical Research Centre'sfunding scheme. J.W.S is supported by the Dr. Marvin Weil EpilepsyResearch Fund.

References

[1] Ngugi AK, Bottomley C, Kleinschmidt I, Sander JW, Newton CR. Estimation of theburden of active and life-time epilepsy: a meta-analytic approach. Epilepsia2010;51:883–90.

[2] World Health Organization. Epilepsy in theWHOAfrica Region, Bridging the Gap:the Global Campaign Against Epilepsy “Out of the Shadows. Geneva: WHO Press;2004.

[3] Radhakrishnan K. Challenges in the management of epilepsy in resource-poorcountries. Nat Rev Neurol 2009;5:323–30.

[4] Bell GS, Sander JW. The epidemiology of epilepsy: the size of the problem. Seizure2001;10:306–14.

[5] Benamer HT, Grosset DG. A systematic review of the epidemiology of epilepsy inArab countries. Epilepsia 2009;50:2301–4.

[6] Ding D, Hong Z, Wang W, et al. Assessing the disease burden due to epilepsy bydisability adjusted life year in rural China. Epilepsia 2006;47:2032–7.

[7] Edwards T, Scott AG, Munyoki G, et al. Active convulsive epilepsy in a ruraldistrict of Kenya: a study of prevalence and possible risk factors. Lancet Neurol2008;7:50–6.

[8] MacDonald BK, Cockerell OC, Sander JW, Shorvon SD. The incidence and lifetimeprevalence of neurological disorders in a prospective community-based study inthe UK. Brain 2000;123:665–76.

[9] Noronha AL, Borges MA, Marques LH, et al. Prevalence and pattern of epilepsytreatment in different socioeconomic classes in Brazil. Epilepsia 2007;48:880–5.

[10] Olafsson E, Hauser WA. Prevalence of epilepsy in rural Iceland: a populationbased study. Epilepsia 1999;40:1529–34.

[11] Placencia M, Shorvon SD, Paredes V, et al. Epileptic seizures in an Andean regionof Ecuador: incidence and prevalence and regional variation. Brain 1992;115:771–82.

[12] Rwiza HT, Kilonzo GP, Haule J, et al. Prevalence and incidence of epilepsy inUlanga, a rural Tanzanian district: a community-based study. Epilepsia 1992;33:1051–6.

[13] Aziz H, Ali SM, Frances P, Khan MI, Hasan KZ. Epilepsy in Pakistan: a population-based epidemiologic study. Epilepsia 1994;35:950–8.

[14] Sander JW. The epidemiology of epilepsy revisited. Curr Opin Neurol 2003;16:165–70.

[15] Khatri IA, Iannaccone ST, Ilyas MS, Abdullah M, Saleem S. Epidemiology ofepilepsy in Pakistan: review of literature. J Pak Med Assoc 2003;53:594–7.

[16] Sander JW, Shorvon SD. Epidemiology of the epilepsies. J Neurol NeurosurgPsychiatry 1996;61:433–43.

[17] Burneo JG, Tellez-Zenteno J, Wiebe S. Understanding the burden of epilepsy inLatin America: a systematic review of its prevalence and incidence. Epilepsy Res2005;66:63–74.

[18] Mac TL, Tran DS, Quet F, Odermatt P, Preux PM, Tan CT. Epidemiology, aetiology,and clinical management of epilepsy in Asia: a systematic review. Lancet Neurol2007;6:533–43.

[19] Preux P-M. Druet-Cabanac M. Epidemiology and etiology of epilepsy in sub-Saharan Africa. Lancet Neurol 2005;4:21–31.

[20] Haerer AF, Anderson DW, Schoenberg BS. Prevalence and clinical features ofepilepsy in a biracial United States population. Epilepsia 1986;27:66–75.

[21] Kelvin EA, Bagiella E, Andrews H, et al. Prevalence of self-reported epilepsy in amultiracial and multiethnic community in New York City. Epilepsy Res 2007;77:141–50.

[22] Shamansky S, Glaser G. Socio-economic characteristics of childhood seizuredisorders in the New Haven area: an epidemiological study. Epilepsia 1979;20:457–74.

[23] Heaney DC, MacDonald BK, Everitt A, et al. Socio-economic variation in incidenceof epilepsy: a prospective community based study in south east England. BrMed J2002;325:1013–6.

[24] Annegers JF, Dubinsky S, Coan SP, NewmarkME, Roht L. The incidence of epilepsyand unprovoked seizures in multiethnic, urban health maintenance organiza-tions. Epilepsia 1999;40:502–6.

[25] Wright J, Pickard N, Whitfield A, Hakin N. A population-based study of theprevalence, clinical characteristics and effect of ethnicity in epilepsy. Seizure2000;9:309–13.

[26] Rocca WA, Savettieri G, Anderson DW, et al, for the Sicilian Neuro-EpidemiologicStudy (SNES) Group. Door-to-door prevalence survey of epilepsy in three Sicilianmunicipalities. Neuroepidemiology 2001;20:237–41.

[27] Banerjee PN, Filippi D, Allen HauserW. The descriptive epidemiology of epilepsy:a review. Epilepsy Res 2009;85:31–45.

[28] Hauser WA, Kurland LT. The epidemiology of epilepsy in Rochester, Minnesota1935 through 1967. Epilepsia 1975;16:1–66.

[29] Sander JW, Hart YM, Johnson AL, Shorvon SD. National General Practice study ofepilepsy: newly diagnosed epileptic seizures in a general population. Lancet1990;336:1267–71.

Page 6: Multicultural challenges in epilepsy

433E. Bartolini et al. / Epilepsy & Behavior 20 (2011) 428–434

[30] Commission on Tropical Diseases of the International League Against Epilepsy.Relationship between epilepsy and tropical diseases. Epilepsia 1994;35:89–93.

[31] Pal DK, Carpio A, Sander JW. Neurocysticercosis and epilepsy in developingcountries. J Neurol Neurosurg Psychiatry 2000;68:137–43.

[32] Winkler AS, Blocher J, Auer H, Gotwald T, MatujaW, Schmutzhard E. Epilepsy andneurocysticercosis in rural Tanzania: an imaging study. Epilepsia 2009;50:987–93.

[33] VillaránMV, Montano SM, Gonzalvez G, et al. Epilepsy and neurocysticercosis: anincidence study in a Peruvian rural population. Neuroepidemiology 2009;33:25–31.

[34] Garcia HH, Gilman R, Martinez M, et al. Cysticercosis as a major cause of epilepsyin Peru. Lancet 1993;341:197–200.

[35] Del Brutto OH, Santibáñez R, Idrovo L, et al. Epilepsy and neurocysticercosis inAtahualpa: a door-to-door survey in rural coastal Ecuador. Epilepsia 2005;46:583–7.

[36] Medina MT, Rosas E, Rubio-Donnadieu F, Sotelo J. Neurocysticercosis as the maincause of late-onset epilepsy in Mexico. Arch Intern Med 1990;150:325–7.

[37] Wallin MT, Kurtzke JF. Neurocysticercosis in the United States: review of animportant emerging infection. Neurology 2004;63:1559–64.

[38] Sabel M, Neuen-Jacob E, Vogt C, Weber F. Intracerebral neurocysticercosismimicking glioblastoma multiforme: a rare differential diagnosis in CentralEurope. Neuroradiology 2001;43:227–30.

[39] Singh G, Sander JW. Anticysticercal treatment and seizures in neurocysticercosis.Lancet Neurol 2004;3:207–8.

[40] Faiz MA, Rahman MR, Hossain MA, Rashid HA. Cerebral malaria: a study of 104cases. Bangladesh Med Res Counc Bull 1998;24:35–42.

[41] NgoungouEB, Preux PM.Cerebralmalaria andepilepsy. Epilepsia2008;49(Suppl6):19–24.

[42] Carter JA, Neville BG, White S, et al. Increased prevalence of epilepsy associatedwith severe falciparum malaria in children. Epilepsia 2004;45:978–81.

[43] Idro R, Carter JA, Fegan G, Neville BG, Newton CR. Risk factors for persistingneurological and cognitive impairments following cerebral malaria. Arch DisChild 2006;91:142–8.

[44] Versteeg AC, Carter JA, Dzombo J, Neville BG, Newton CR. Seizure disordersamong relatives of Kenyan children with severe falciparummalaria. TropMed IntHealth 2003;8:12–6.

[45] Birbeck GL, Molyneux ME, Kaplan PW, et al. Blantyre Malaria Project EpilepsyStudy of neurological outcomes in retinopathy-positive paediatric cerebralmalaria survivors: a prospective cohort study. Lancet Neurol 2010;9:1173–81.

[46] Birbeck GL. Reflections: neurology and the humanities: reflections for October.Neurology 2009;73:1245–6.

[47] Kilmarx PH. Global epidemiology of HIV. Curr Opin HIV AIDS 2009;4:240–6.[48] Murthy JM. Some problems and pitfalls in developing countries. Epilepsia

2003;44(Suppl 1):38–42.[49] Senanayake N, Roman GC. Epidemiology of epilepsy in developing countries. Bull

World Health Organ 1993;71:247–58.[50] De Bittencourt PRM, Sander JW, Mazer S. Aetiological factors: viral, bacterial,

fungal and parasitic infections associated with seizure disorders. In: Vinken PJ,Bruyn GW, Meinardi H, editors. Handbook of clinical neurology: the epilepsies.Amsterdam: Elsevier; 1999. p. 145–74.

[51] Solomon T, Dung NM, Kneen R, Gainsborough M, Vaughn DW, Khank VT.Japanese encephalitis. J Neurol Neurosurg Psychiatry 2000;68:405–15.

[52] Nicoletti A, Bartoloni A, Reggio A, et al. Epilepsy, cysticercosis, and toxocariasis: apopulation-based case–control study in rural Bolivia. Neurology 2002;58:1256–61.

[53] Farnarier G, Guèye L. Facteurs de risques particuliers des épilepsies en Afrique.Epilepsies 1998;10:105–14.

[54] Nicoletti A, Bartoloni A, Sofia V, et al. Epilepsy and toxocariasis: a case–controlstudy in Burundi. Epilepsia 2007;48:894–9.

[55] Nicoletti A, Sofia V, Mantella A, et al. Epilepsy and toxocariasis: a case–controlstudy in Italy. Epilepsia 2008;49:594–9.

[56] Lynch JK. Epidemiology and classification of perinatal stroke. Semin FetalNeonatal Med 2009;14:245–9.

[57] Sawhney IM, Singh A, Kaur P, Suri G, Chopra JS. A case control study and one yearfollow-up of registered epilepsy cases in a resettlement colony of north India, adeveloping tropical country. J Neurol Sci 1999;165:31–5.

[58] TripathiM, JainS.Genetics inepilepsy: transcultural perspectives. Epilepsia2003;44(Suppl 1):12–6.

[59] Tran DS, Odermatt P, Le TO, et al. Prevalence of epilepsy in a rural district ofcentral Lao PDR. Neuroepidemiology 2006;26:199–206.

[60] Zeng J, Hong Z, Huang MS, Jin MH. A case–control study on the risk factors andother socio-psychological factors of epilepsy. Zhonghua Liu Xing Bing Xue Za Zhi2003;24:116–8.

[61] Nair RR, Thomas SV. Genetic liability to epilepsy in Kerala State, India. EpilepsyRes 2004;62:163–70.

[62] Azmanov DN, Zhelyazkova S, Dimova PS, et al. Mosaicism of a missense SCN1Amutation and Dravet syndrome in a Roma/Gypsy family. Epileptic Disord2010;12:117–24.

[63] Angelicheva D, Tournev I, Guergueltcheva V, et al. Partial epilepsy syndrome in aGypsy family linked to 5q31.3–q32. Epilepsia 2009;50:1679–88.

[64] Tournev I, Royer B, Szepetowski P, et al. Familial generalized epilepsy in BulgarianRoma. Epileptic Disord 2007;9:300–6.

[65] Boonluksiri P. Risk of recurrence following a first unprovoked seizure in Thaichildren. Neurol J Southeast Asia 2003;8:25–9.

[66] Verma A, Misra S. Risk of seizure recurrence after antiepileptic drug withdrawal,an Indian study. Neurol Asia 2006;11:19–23.

[67] Placencia M, Sander JW, Roman M, et al. The characteristics of epilepsy in alargely untreated population in rural Ecuador. J Neurol Neurosurg Psychiatry1994;57:320–5.

[68] WangWZ,Wu JZ,Wang DS, et al. The prevalence and treatment gap in epilepsy inChina: an ILAE/IBE/WHO study. Neurology 2003;60:1544–5.

[69] Birbeck GL. Seizures in rural Zambia. Epilepsia 2000;41:277–81.[70] Jilek-Aall L, Jilek M, Kaaya J, Mkombachepa L, Hillary K. Psychosocial study of

epilepsy in Africa. Soc Sci Med 1997;45:783–95.[71] Amare A, Zenebe G, Hammack J, Davey G. Status epilepticus: clinical presentation,

cause, outcome, and predictors of death in 119 Ethiopian patients. Epilepsia2008;49:600–7.

[72] Cockerell OC, Johnson AL, Sander JW, Hart YM, Goodridge DM, Shorvon SD.Mortality from epilepsy: results from a prospective population-based study.Lancet 1994;344:918–21.

[73] Lhatoo SD, Johnson AL, Goodridge DM, MacDonald BK, Sander JW, Shorvon SD.Mortality in epilepsy in the first 11 to 14 years after diagnosis: multivariateanalysis of a long-term, prospective, population-based cohort. Ann Neurol2001;49:336–44.

[74] Ding D, WangW,Wu J, et al. Premature mortality in people with epilepsy in ruralChina: a prospective study. Lancet Neurol 2006;5:823–7.

[75] Kamgno J, Pion SD, Boussinesq M. Demographic impact of epilepsy in Africa:results of a 10 year cohort study in a rural area of Cameroon. Epilepsia 2003;44:956–63.

[76] Tekle-Haimanot R, Forsgren L, Abebe M, et al. Clinical and electroencephalo-graphic characteristics of epilepsy in rural Ethiopia: a community-based study.Epilepsy Res 1990;7:230–9.

[77] Aarli JA. Neurology and WHO: challenges and issues. A report. World Neurol2002;17:10–1.

[78] Mani KS. Global campaign against epilepsy: agenda for IEA/IES. Neurol India1998;46:1–4.

[79] World Health Organization. International Bureau for Epilepsy, InternationalLeague against Epilepsy. Atlas: epilepsy care in the world 2005. Geneva: WHO;2005.

[80] Dua T, de Boer HM, Prilipko LL, Saxena S. Epilepsy care in the world: results of anILAE/IBE/WHO Global Campaign Against Epilepsy survey. Epilepsia 2006;47:1225–31.

[81] Kale R. Global campaign against epilepsy: the treatment gap. Epilepsia 2002;43(Suppl 6):31–3.

[82] Meinardi H, Scott RA, Reis R, Sander JW. The treatment gap in epilepsy: thecurrent situation and ways forward. Epilepsia 2001;42:136–49.

[83] MbubaCK,Ngugi AK,NewtonCR, Carter JA. The epilepsy treatmentgap in developingcountries: a systematic review of themagnitude, causes, and intervention strategies.Epilepsia 2008;49:1491–503.

[84] Ismail H, Wright J, Rhodes P, Small N. Religious beliefs about causes and treat-ment of epilepsy. Br J Gen Pract 2005;55:26–31.

[85] Carrazana E, DeToledo J, Tatum W, Rivas-Vasquez R, Rey G, Wheeler S. Epilepsyand religious experiences: voodoo possession. Epilepsia 1999;40:239–41.

[86] Aadil N, Houti IE, Moussamih S. Drug intake during Ramadan. Br Med J 2004;329:778–82.

[87] Gomceli YB, Kutlu G, Cavdar L, Inan LE. Does the seizure frequency increase inRamadan? Seizure 2008;17:671–6.

[88] Adotevi F, Stephany J. Cultural perception of epilepsy in Senegal (Cap-Vert andriver district). Med Trop 1981;41:283–7.

[89] Ojinnaka NC. Teachers’ perceptions of epilepsy in Nigeria: a community basedstudy. Seizure 2002;11:386–91.

[90] Millogo A, Ratsimbazafy V, Nubukpo P, Barro S, Zongo I, Preux PM. Epilepsy andtraditional medicine in Bobo-Dioulasso (BurkinaFaso). Acta Neurol Scand2004;109:250–4.

[91] Njamnshi AK, Bissek AC, Yepnjio FN, et al. A community survey of knowledge,perceptions, and practice with respect to epilepsy among traditional healers inthe Batibo District, Cameroon. Epilepsy Behav 2010;17:95–102.

[92] Rambe AS, Sjahrir H. Awareness, attitude and understanding towards epilepsyamong school teachers inMedan, Indonesia. Neurol J Southeast Asia 2002;7:77–80.

[93] Somasundaram O. Seizure disorders: views of the Indianmedical system. Indian JPsychiatry 2001;43:12–5.

[94] Baskind R, Birbeck GL. Epilepsy-associated stigma in sub-Saharan Africa: thesocial landscape of a disease. Epilepsy Behav 2005;7:68–73.

[95] Birbeck GL. Traditional African medicines complicate the management of febrileseizures. Eur Neurol 1999;42:184.

[96] Njamnshi AK. Nonphysician management of epilepsy in resource-limitedcontexts: roles and responsibilities. Epilepsia 2009;50:2167–8.

[97] Zhao Y, Zhang O, Tsering T, et al. Prevalence of convulsive epilepsy and health-related quality of life of the population with convulsive epilepsy in rural areas ofTibet Autonomous Region in China. Epilepsy Behav 2008;12:373–81.

[98] Jacoby A, Wang W, Vu TD, et al. Meanings of epilepsy in its sociocultural contextand implications for stigma: findings from ethnographic studies in localcommunities in China and Vietnam. Epilepsy Behav 2008;12:286–97.

[99] White SD. Deciphering ‘integrated Chinese and Western medicine’ in the ruralLijiang basin: state policy and local practice(s) in socialist China. Soc Sci Med1999;49:1333–47.

[100] Hijikata Y, Yasuhara A, Yoshida Y, Sento S. Traditional Chinese medicine treat-ment of epilepsy. J Altern Complement Med 2006;12:673–7.

[101] Li Q, Chen X, He L, Zhou D. Traditional Chinese medicine for epilepsy. CochraneDatabase Syst Rev 2009;3:CD006454.

[102] Cheuk DK, Wong V. Acupuncture for epilepsy. Cochrane Database Syst Rev2008;4:CD005062.

Page 7: Multicultural challenges in epilepsy

434 E. Bartolini et al. / Epilepsy & Behavior 20 (2011) 428–434

[103] Burneo JG, Jette N, Theodore W, et al. Disparities in epilepsy: report of asystematic review by the North American Commission of the InternationalLeague Against Epilepsy. Epilepsia 2009;50:2285–95.

[104] World Health Organization. Regional Office for Africa and the Global CampaignAgainst Epilepsy “Out of the Shadows”. Epilepsy in theWHOAfricanRegion: Bridgingthe Gap. Brazzaville:WHO Regional Office for Africa; 2004. Available at:http://www.ecoi.net/file_upload/432_1198069054_epilepsy-in-african-region.pdf. Accessed: 23December 2010.

[105] Akhtar SW, Aziz H. Perception of epilepsy in Muslim history; with currentscenario. Neurol Asia 2004;9(Suppl 1):59–60.

[106] Carod-Artal FJ. Vázquez-Cabrera CB. An anthropological study about epilepsy innative tribes from Central and South America. Epilepsia 2007;48:886–93.

[107] Ramaratnam S, Narasimha MB, Hills MD, et al. Epilepsy in Asia. Epilepsia 2005;46(Suppl 1):89–90.

[108] Jilek-Aall L. Morbus sacer in Africa: some religious aspects of epilepsy in tradi-tional cultures. Epilepsia 1999;40:382–6.

[109] Johannessen Landmark C, Patsalos PN. Drug interactions involving the newsecond- and third-generation antiepileptic drugs. Expert Rev Neurother2010;10:119–40.

[110] Bercaw J, Maheshwari B, Sangi-Haghpeykar H. The use during pregnancy ofprescription, over-the-counter, and alternative medications among Hispanicwomen. Birth 2010;37:211–8.

[111] Eisenberg DM, Kessler RC, Foster C, Norlock FE, Calkins DR, Delbanco TL.Unconventional medicine in the United States: prevalence, costs, and patterns ofuse. N Engl J Med 1993;328:246–52.

[112] Scott RA, Lhatoo SD, Sander JW. The treatment of epilepsy in developingcountries: where do we go from here? Bull WHO 2001;79:344–51.

[113] Reynolds EH. The ILAE/IBE/WHO Global Campaign Against Epilepsy: bringingepilepsy “out of the shadows. Epilepsy Behav 2000;1:S3–8.

[114] Radhakrishnan K, Pandian JD, Santhoshkumar T, et al. Prevalence, knowledge,attitude, and practice of epilepsy in Kerala, south India. Epilepsia 2000;41:1027–35.

[115] Fong CY, Hung A. Public awareness, attitude and understanding of epilepsy inHong Kong special administrative region, China. Epilepsia 2002;43:311–6.

[116] Gourie-Devi M, Satishchandra P, Gururaj G. Epilepsy control program in India: adistrict model. Epilepsia 2003;44(Suppl 1):58–62.

[117] De Boer HM, Mula M, Sander JW. The global burden and stigma of epilepsy.Epilepsy Behav 2008;12:540–6.

[118] Sander JW. Global Campaign Against Epilepsy: overview of the demonstrationprojects. Epilepsia 2002;43(Suppl 6):34–6.

[119] Berhanu S, Alemu S, Prevett M, Parry EH. Primary care treatment of epilepsy inrural Ethiopia: causes of default from follow-up. Seizure 2009;18:100–3.

[120] Bozkaya IO, Arhan E, Serdaroglu A, Soysal AS, Ozkan S, Gucuyener K. Knowledgeof, perception of, and attitudes toward epilepsy of schoolchildren in Ankara andthe effect of an educational program. Epilepsy Behav 2010;17:56–63.

[121] Elliott J, Shneker B. Patient, caregiver, and health care practitioner knowledge of,beliefs about, and attitudes toward epilepsy. Epilepsy Behav 2008;12:547–56.

[122] Farmer PJ, Placencia M, Jumbo L, Sander JW, Shorvon SD. Help-seeking strategiesfor epilepsy by previously untreated patients in Northern Ecuador. Epilepsy Res1992;11:205–13.

[123] Fernandes PT, Noronha AL, Araújo U, et al. Teachers perception about epilepsy.Arq Neuropsiquiatr 2007;65(Suppl 1):28–34.

[124] Feksi AT, Kaamugisha J, Sander JW, Gatiti S, Shorvon SD. Comprehensive primaryhealth care antiepileptic drug treatment programme in rural and semi-urbanKenya. Lancet 1991;337:406–9.

[125] Wang W, Wu J, Dai X, et al. Global campaign against epilepsy: assessment of ademonstration project in rural China. Bull WHO 2008;86:964–9.

[126] Wang W, Zhao D, Wu J, et al. Changes in knowledge, attitude, and practice ofpeople with epilepsy and their families after an intervention in rural China.Epilepsy Behav 2009;16:76–9.

[127] Li LM, Fernandes PT, Noronha AL, et al. Demonstration project on epilepsy inBrazil: outcome assessment. Arq Neuropsiquiatr 2007;65(Suppl 1):58–62.

[128] Mani KS, Rangan G, Srinivas HV, Srindharan VS, Subbakrishna DK. Epilepsycontrol with phenobarbital or phenytoin in rural south India: the Yelandur study.Lancet 2001;357:1316–20.

[129] Placencia M, Sander JW, Shorvon SD, et al. Antiepileptic drug treatment in acommunity health care setting in northern Ecuador: a prospective 12-monthassessment. Epilepsy Res 1993;14:237–44.

[130] Reis R. Evil in the body, disorder of the brain: interpretations of epilepsy and thetreatment gap in Swaziland. Trop Geogr Med 1994;46(3, Suppl):S40–3.

[131] Shorvon SD, Farmer PJ. Epilepsy in developing countries: a review of epidemiolog-ical, sociocultural, and treatment aspects. Epilepsia 1988;29(Suppl 1):S36–54.

[132] Fernandes PT, Noronha AL, Sander JW, Li LM. Stigma scale of epilepsy: theperception of epilepsy stigma in different cities in Brazil. Arq Neuropsiquiatr2008;66:471–6.

[133] Fernandes PT, Salgado PC, Noronha AL, et al. Prejudice towards chronic diseases:comparison among epilepsy, AIDS and diabetes. Seizure 2007;16:320–3.

[134] Reno BA, Fernandes PT, Bell GS, Sander JW, Li LM. Stigma and attitudes onepilepsy: a study with secondary school students. Arq Neuropsiquiatr 2007;65(Suppl 1):49–54.

[135] Fernandes PT, Salgado PC, Noronha AL, et al. Epilepsy stigma perception in anurban area of a limited-resource country. Epilepsy Behav 2007;11:25–32.

[136] Hosseini N, Sharif F, Ahmadi F, Zare M. Striving for balance: coping with epilepsyin Iranian patients. Epilepsy Behav 2010;18:466–71.

[137] Ismail H, Wright J, Rhodes P, Small N, Jacoby A. South Asians and epilepsy:exploring health experiences, needs and beliefs of communities in the north ofEngland. Seizure 2005;14:497–503.

[138] Zarrelli MM, Beghi E, Rocca WA, Hauser WA. Incidence of epileptic syndromes inRochester, Minnesota: 1980–1984. Epilepsia 1999;40:1708–14.

[139] Cockerell OC, Goodridge DM, Brodie D, Sander JW, Shorvon SD. Neurologicaldisease in a defined population: the results of a pilot study in two generalpractices. Neuroepidemiology 1996;15:73–82.

[140] Granieri E, Rosati G, Tola R, et al. A descriptive study of epilepsy in the district ofCopparo, Italy, 1964–1978. Epilepsia 1983;24:502–14.

[141] Lavados J, Germain L, Morales A, Campero M, Lavados P. A descriptive study ofepilepsy in the district of El Salvador, Chile, 1984–1988. Acta Neurol Scand1992;85:249–56.

[142] Wang W, Wu J, Wang D, et al. Epidemiological survey on epilepsy among ruralpopulations in five provinces in China. Zhonghua Yi Xue Za Zhi 2002;82:449–52.

[143] Kaiser C, Asaba G, Leichsenring M, et al. High incidence of epilepsy related toonchocerciasis in West Uganda. Epilepsy Res 1998;30:247–51.

[144] Akyuz G, Kugu N, Akyuz A, Dogan O. Dissociation and childhood abuse history inepileptic and pseudoseizure patients. Epileptic Disord 2004;6:187–92.

[145] Bener A, Saad AG, Micallef R, Ghuloum S, Sabri S. Sociodemographic and clinicalcharacteristics of patients with dissociative disorders in an Arabian society. MedPrinc Pract 2006;15:362–7.

[146] El-Rufaie OEF, Daradkeh TK. Psychiatric screening in primary health care:transcultural application of psychiatric instrument. Prim Care Psychiatry 1997;3:37–43.

[147] Chattopadhyay P, Ghosh S, Nayak A, Das P, Bandyopadhyay A. Sociodemographicprofile of normal EEG-dissociative disorder (convulsion) patients. J Indian MedAssoc 2009;107:549–59.

[148] Foyaca-Sibat H, Ibañez-Valdés LdeF. Pseudoseizures and epilepsy in neurocys-ticercosis. Rev Electron Biomed/Electron J Biomed 2003;1:79–87.

[149] Silva W, Giagante B, Saizar R, et al. Clinical features and prognosis of nonepilepticseizures in a developing country. Epilepsia 2001;42:398–401.

[150] Hauser WA, Annegers JF, Kurland LT. Prevalence of epilepsy in Rochester,Minnesota: 1940–1980. Epilepsia 1991;32:429–45.

[151] Bharucha NE, Bharucha EP, Bharucha AE, Bhise AV, Schoenberg BS. Prevalence ofepilepsy in the Parsi community of Bombay. Epilepsia 1988;29:111–5.