Review

Nature Reviews Neurology 5, 323-330 (June 2009) | doi:10.1038/nrneurol.2009.53

Subject Category: Epilepsy

Challenges in the management of epilepsy in resource-poor countries

Kurupath Radhakrishnan1  About the author

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Of the 50 million people with epilepsy worldwide, around 80% reside in resource-poor countries, which are ill-equipped to tackle the enormous medical, social and economic challenges posed by epilepsy. The capability to identify people with epilepsy and provide cost-effective care is compromised by widespread poverty, illiteracy, inefficient and unevenly distributed health-care systems, and social stigma and misconceptions surrounding the disease. Several studies have reported that a large proportion of patients with epilepsy in resource-poor countries never receive appropriate treatment for their condition, and many, although diagnosed and initiated on treatment, soon discontinue treatment. The high cost of treatment, a lack of availability of antiepileptic drugs, and superstitious and cultural beliefs contribute to a large epilepsy treatment gap. A substantial proportion of the current burden of epilepsy in resource-poor countries could be minimized by educating the public about positive features of life with epilepsy, informing primary and secondary physicians about current trends in the management of epilepsies, scaling up routine availability of low-cost antiepileptic drugs, and developing cost-effective epilepsy surgery programs. A comprehensive epilepsy care model should consider the marked heterogeneity of the disorder and its variable effects on the patient, family and community.

Key points

  • Resource-poor countries carry an enormous burden of epilepsy
  • A substantial proportion of patients in resource-poor countries never receive appropriate treatment
  • This treatment gap can be minimized by educating primary care physicians on how to diagnose epilepsy and administer phenobarbital treatment
  • Few of the epilepsy surgery programs in resource-poor countries have produced results comparable to those in wealthier countries
  • Epilepsy care programs in resource-poor countries must adjust to local sociocultural, political and economic scenarios

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Introduction

Epilepsy is a major public health concern, directly affecting an estimated 50 million people worldwide, and involving an additional 500 million people as family members and caregivers of patients.1, 2 The Atlas of Epilepsy Care, which was published in 2005 jointly by the WHO, the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE), describes global dimensions of the medical, sociological, psychological and financial consequences of epilepsy, and highlights the difficulties encountered in implementing epilepsy care programs. The authors conclude that "when it comes to epilepsy care, most countries are developing countries".3 According to the 2003 gross national income per capita, the World Bank has classified countries into four categories: low-income (less than or equal toUS$765), lower middle-income (US$766–3,035), upper middle-income (US$3,036–9,385), and high-income (greater than or equal toUS$9,386).4 Most of the countries belonging to the low-income and lower-middle income categories, which I have grouped together for the purposes of this Review as resource-poor countries, are located within Latin America, sub-Saharan Africa, South and East Asia, and the Pacific regions. According to the 2008 World Bank listing,4 103 (49 low-income and 54 lower middle-income) of 209 countries (49.3%) belong to the resource-poor category.

A physician who is caring for a person with a suspected seizure disorder needs to address several questions pertaining to diagnosis and treatment (Box 1). As our understanding of the etiopathogenesis and natural history of various epilepsy syndromes continues to improve, and a variety of pharmacological and nonpharmacological treatment options are developed, demand for specialized care for individuals with epilepsy increases. The choice of diagnostic and therapeutic approach depends on the clinical setting, availability of and access to health-care facilities, and economic factors.

Resource-poor countries share several traits that make them ill-equipped to tackle the enormous medical, social and economic challenges posed by epilepsy (Box 2). The health-care systems in these countries are typically weak and inefficient. Poverty is widespread, and gross wastage and misallocation of available national resources occur. The infrastructure and financial, human and material resources in the health sector are unevenly distributed. The few efficient health-care facilities that exist in these countries predominantly benefit people who reside in urban areas and those belonging to the economically advantaged section of society, and rarely benefit the poorer sections of the population who live mostly in rural areas. Social stigma, myths and misconceptions associated with epilepsy often prevent people with this condition from seeking medical help. In addition, in most resource-poor countries, patients and their caregivers will have to bear the entire cost of treatment. Together, these factors make the identification of people with epilepsy and provision of cost-effective epilepsy care extremely challenging.

To compare epilepsy burden and health-care performance across countries, in 2008 the ILAE recommended using new WHO measures such as disability-adjusted life years, responsiveness of the health-care system to patient needs, and financial fairness.5 However, the reliable data that are necessary to make even approximate estimates of the above WHO measures, such as epilepsy-related mortality and disability, and health-care system performance and its modes of financing, are seldom available from resource-poor countries.

In this Review, I highlight the challenges faced when managing patients with epilepsy in resource-poor settings and suggest pragmatic solutions to overcome these difficulties. As well as reviewing the relevant literature, I draw on my own experiences in setting up community-based and tertiary-referral-center-based epilepsy care programs in southern India and successfully sustaining these programs for the past 15 years.

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Burden of epilepsy

In 2004, the WHO estimated that nearly 80% of the burden of epilepsy worldwide is borne by the resource-poor countries.2 In developed countries, the lifetime prevalence rate for epilepsy ranges from 3.5 to 10.7 per 1,000 person-years, and the incidence rate ranges from 24 to 53 per 100,000 person-years.6, 7 In recent systematic reviews, the lifetime prevalence rates for active epilepsy varied from 1.5 to 14 per 1,000 person-years in Asia,8 from 5.1 to 57.0 per 1,000 person-years in Latin America,9 and from 5.2 to 74.4 per 1,000 person-years in sub-Saharan Africa.10 It is unclear whether these wide variations within and between geographical regions are merely apparent (that is, attributable to misdiagnosis, varying definitions of epilepsy, failure to take account of the disease activity, and/or inconsistent definitions of active epilepsy) or whether they are real (that is, related to geographically relevant risk factors such as poverty, illiteracy, poor sanitation, inaccessibility of medical care, birth-related or accident-related head trauma, and/or cerebral cysticercosis).11 The median lifetime epilepsy prevalence rate in Asia (6 per 1,000 person-years) was lower than in sub-Saharan Africa and Latin America (15 and 18 per 1,000 person-years, respectively).8, 9, 10 The annual incidence rates for epilepsy in Asia (29–60 per 100,000 person-years) did not differ significantly from the rates in developed countries, but the incidence rates were higher in sub-Saharan Africa and Latin America (63–158 and 78–190 per 100,000 person-years, respectively).8, 9, 10, 12 In contrast with the steady increase in epilepsy prevalence rates with advancing age that is seen in developed countries,12 the rates seem to peak in the second decade in resource-poor countries.8, 9, 10

In a meta-analysis of data obtained from 20 community-based prevalence studies on epilepsy in India, Sridharan and Murthy13 derived a prevalence rate of 5.3 per 1,000 person-years (95% CI 4.3–6.4). Through a three-phase survey (screening, diagnostic and confirmation phases), conducted in a semiurban area of central Kerala, southern India, my group obtained an age-adjusted prevalence rate of 4.7 per 1,000 person-years.14 On the basis of a prevalence rate of 5 per 1,000 person-years and an incidence rate of 50 per 100,000 person-years, it is estimated that at any given time, India, with its population of over one billion inhabitants, will have at least 5 million people with active epilepsy, to which nearly 500,000 people are added annually. A study conducted by the ILAE, the IBE and the WHO estimated the prevalence of epilepsy in rural China to be 4.6 per 1,000 person-years.15 China, which has a population of over 1.3 billion people, is thought to have nearly 6 million people with epilepsy. China and India, the two most populous nations in the world, together contribute approx20% of the people with epilepsy worldwide.

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Diagnostic facilities

The diagnosis of epilepsy is fundamentally a clinical judgment made on the basis of a clinical history. The accuracy of the diagnosis depends on the skill and experience of the physician and the quality and reliability of the information provided by witnesses.

In resource-poor countries, on average, one neurologist is available for every 3–5 million people, although many Latin American and African regions have no neurologists at all.16 India, with around 1,000 neurologists, has one neurologist to 1 million people,17 which translates into one neurologist to care for 5,000 people with epilepsy. A recent survey conducted by the ILAE, the IBE and the WHO showed that people with epilepsy had access to specialist care in 89% of high-income countries, compared with only 56% of low-income countries.18 Furthermore, nearly two-thirds of people in resource-poor countries reside in rural areas, while nearly all the neurologists in these countries practice in or close to large cities and towns.19 As a consequence, most people with epilepsy in resource-poor countries are diagnosed, treated and followed by primary and secondary care physicians who have no specific training or expertise in epilepsy management.

If epilepsy is strongly suspected, EEG can provide very valuable information to establish the diagnosis, and to define the type of epilepsy and the epilepsy syndrome.20 In a recent report, EEG services were found to be available in three-quarters of resource-poor countries surveyed.18 However, no minimum standards exist for EEG laboratories in resource-poor countries, and there are no governmental or professional authorities to ensure quality control. Most EEG laboratories in resource-poor countries are managed by laboratory technologists and paramedical personnel with no formal training in performing EEG recordings. Even in the best medical schools in these countries, postgraduates undergoing training in neurology often receive inadequate exposure to EEG and epileptology. Consequently, EEG results are frequently misinterpreted, leading to overdiagnosis of epilepsy and unnecessarily prolonged antiepileptic drug (AED) therapy. This raises the question of whether EEG is actually required for managing patients with epilepsy in resource-poor countries, given that the quality of the recording and its interpretation cannot be ensured. In a large, community-based intervention trial in rural China, convulsive epilepsy was diagnosed correctly through history and witness accounts without the aid of EEG.21 Similarly, a study reporting the long-term outcome of a cohort of patients with epilepsy from a tribal population in rural Karnataka, southern India, demonstrated that epilepsy could be diagnosed on clinical grounds alone.22

Neuroimaging is not necessary in patients with well-characterized idiopathic generalized epilepsies, such as childhood or juvenile absence epilepsies, juvenile myoclonic epilepsy, and idiopathic benign childhood localization-related epilepsies. However, all patients with adult-onset focal seizures or with unsatisfactory seizure control should undergo brain MRI.23 In a 2006 survey of the diagnostic facilities for epilepsy care around the world, MRI facilities were available in almost all European and North American countries, compared with only 26% of African, 48% of Western Pacific and 56% of Southeast Asian countries.18 In India, many private facilities provide financial incentives to the physician for referring patients for MRI, which often results in unnecessary referrals. Commonly, therefore, patients are encountered with epilepsy who need MRI but are unable to afford it, while patients in whom very little indication exists for this investigation might have already received it before reaching a tertiary referral center. Moreover, most MRI scans performed outside comprehensive epilepsy care facilities do not conform to the specification laid down for patients with chronic epilepsy.23, 24 Repeating the MRI results in financial hardship for the patient and family. The need to educate primary and secondary care providers about the roles of EEG and MRI in epilepsy evaluation cannot be overemphasized.

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Medical treatment gap

Several studies have reported that a large proportion of patients with epilepsy in resource-poor countries do not receive appropriate treatment for their condition, a phenomenon known as the treatment gap.25, 26 The treatment gap is defined as the number of people with active epilepsy not on treatment or on inadequate treatment, expressed as a percentage of the total number with active epilepsy.1, 25 A recent systematic analysis that investigated the magnitude of the treatment gap in resource-poor countries found an overall rate of 56% (95% CI 31–100%),26 and the following region-specific and location-specific rates: Latin America, 55% (95% CI 39–79%); Asia, 64% (95% CI 24–100%); Africa, 49% (95% CI 14–100%); rural populations, 73% (95% CI 50–100%); and urban populations, 47% (95% CI 34–64%). The authors ascribed the wide variations in the estimates to a lack of uniformity in the definition of 'treatment gap' and in methods of its estimation. In the highly literate population of Kerala, southern India, my group observed a treatment gap rate of 38% (95% CI 35%–41%).14 In a recent systematic review, the main causes of the treatment gap were cost of treatment (median 62%, range 11–90%), nonavailability of AEDs (median 53%, range 18–44%), belief in traditional treatment (median 44%, range 6–82%), and superstitions and cultural beliefs (median 40%, range 7–65%).26

In resource-poor countries, a large proportion of patients with epilepsy, despite being diagnosed and initiated on AED treatment, soon discontinue the treatment. In epidemiological surveys, such patients would be categorized as not being on treatment. Das et al. coined the term 'secondary treatment gap' to designate this phenomenon.27 In a prospective observational study of 1450 patients followed in an urban clinic in northeastern India, 620 (43%) discontinued their treatment within 1 year.27 Among these individuals, 89% experienced more than two breakthrough seizures following AED discontinuation. The principal reasons that were cited for AED discontinuation were the inability to afford the treatment and a lack of information about the consequences of medication nonadherence.

An economic analysis that set out to establish the expected costs and cost-effectiveness of first-line AEDs (that is, phenobarbital, phenytoin, carbamazepine and valproic acid) concluded that the current large treatment gap in resource-poor countries could be reduced considerably by scaling up the routine availability of low-cost AEDs such as phenobarbital and phenytoin.28 Worldwide, the median cost of the defined daily dose of phenobarbital is 0.14 international dollars; the cost is threefold higher than this for phenytoin, 11-fold higher for carbamazepine, and 16-fold higher for valproic acid. The international dollar is a hypothetical currency that is used as a means of translating and comparing costs from one country to another, using US dollars as a common reference point and considering the purchasing power parity of a country's currency.29 The WHO has provided a listing of the purchasing-power-parity exchange rates of individual countries.29 When compared in international dollars, the median costs of all the first-line AEDs are more expensive in resource-poor countries than in high-income countries.

Unfortunately, most patients with epilepsy in resource-poor countries are treated with multiple—and often expensive—AEDs simultaneously. In a study undertaken by my group, nearly 58% of 972 patients were receiving polytherapy with AEDs at the time of referral from primary and secondary care facilities to a tertiary care center.30 Among the patients on polytherapy, 95% were receiving inadequate doses of AEDs. The costs of 90 mg phenobarbital and 300 mg phenytoin AED therapy were 4% and 7% of the average per capita gross national product (GNP per capita), respectively, whereas the costs of 800 mg carbamazepine and 1200 mg valproic acid were 17% and 30% of GNP per capita, respectively.30 The simultaneous use of multiple AEDs caused the cost to escalate enormously. A sizeable proportion of these patients could be weaned off unnecessary AEDs, resulting in better seizure control, fewer adverse effects, and financial savings.

The irrational polytherapy for epilepsy that is common in resource-poor countries can probably be attributed to the increasingly widespread availability of AEDs (including new AEDs) in recent years, combined with inadequate knowledge of about current trends in the pharmacotherapy of epilepsy among primary and secondary care physicians, who provide the initial treatment for the majority of patients with epilepsy in these countries. One of the most important roles for epilepsy specialists at the tertiary referral centers in resource-poor countries should be the continuing medical education of other medical practitioners down the line.

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Surgical treatment gap

Long-term follow-up of patients with newly diagnosed epilepsies has shown that nearly one-third will have their seizures unsatisfactorily controlled by treatment with AEDs.31 Owing to remarkable advances in neuroimaging technologies over the past two decades, detection of a variety of brain lesions that are amenable to surgical resection in over 50% of patients with medically refractory focal epilepsies is now possible.32, 33 These lesions include hippocampal sclerosis, malformations of cortical development, benign neoplasms, vascular malformations, and focal gliotic lesions. Working on the understanding that most patients with substrate-directed intracranial lesions associated with chronic focal epilepsies can be selected for surgery on the basis of relatively simple and affordable noninvasive presurgical evaluation strategies, many developing countries have created epilepsy surgery programs in recent years.33 However, a report from 2000 revealed that only 26 out of 142 (18%) economically disadvantaged nations had at least one center that regularly conducted epilepsy surgery, compared with 18 out of 24 (75%) developed countries.34 In a 2006 survey conducted by the ILAE, the IBE and the WHO, epilepsy surgery was found to be available in only 13% of low-income countries compared with 66% of high-income countries.18

The success of epilepsy surgery depends on the early identification of potential surgical candidates, and, from these individuals, the selection of ideal candidates who are expected to have a postoperative seizure-free outcome. Two basic requirements must be fulfilled before an epilepsy surgery program can be introduced in any geographical region. First, there must be an adequate level of medical infrastructure to enable the identification of prospective surgical candidates. Second, there needs to be a comprehensive epilepsy care organization where such patients can be subjected to a multidisciplinary evaluation to decide on their surgical candidacy.

Most patients with epilepsy in resource-poor countries are treated by primary and secondary care physicians, many of whom still consider epilepsy to be an incurable, chronic disorder. Epilepsy clinics in a resource-poor setting have to cater for a large number of patients with a very limited number of skilled personnel. Overcrowding of clinics severely limits the time that is available for clinical assessment of individual patients. A frequent difficulty encountered in identifying medical refractoriness among patients with chronic epilepsy in resource-poor countries is that although many AEDs have been used, none were administered for sufficiently long periods and in adequate doses, either alone or in combinations.30 Additionally, in many geographical regions, local superstitions and customs would prevent patients from seeking medical and surgical treatment (see below).

Epilepsy surgery centers in resource-poor countries will lack the full range of state-of-the-art technologies to perform presurgical evaluation and surgery that are usually available in the developed world. Despite the fact that the total direct cost of presurgical evaluation and surgery in resource-poor countries amounts to a small fraction of the cost incurred in developed countries, this expenditure is still beyond the reach of the majority of patients.35 For example, very few patients in resource-poor countries can afford the cost of the intracranial electrodes that are used in invasive evaluation. To become cost-effective, it will be necessary for epilepsy surgery centers in these countries to achieve excellent results by selecting candidates who are destined to have a seizure-free outcome, such as those with mesial temporal lobe epilepsy or circumscribed potentially epileptic lesions. The centers must make these selections by use of locally available expertise and relatively inexpensive and noninvasive technologies, and without compromising on patient safety.35, 36 Patients with large epileptogenic lesions involving primarily one hemisphere can be selected for hemispherectomy, and patients with diffuse encephalopathies and multifocal diseases can be selected for corpus callosotomy.37, 38

Despite these challenges, the past one and a half decades have seen several epilepsy surgery centers in resource-poor countries successfully implementing epilepsy surgery programs and producing results comparable to those from developed countries.35, 36 For example, the R. Madhavan Nayar Center for Comprehensive Epilepsy Care at Trivandrum, Kerala—one of the leading centers for epilepsy care in Asia—has undertaken over 1,000 surgical procedures for epilepsy over the past 14 years.39

In India as a whole, there are estimated to be over 500,000 potential candidates for epilepsy surgery, but no more than 200 epilepsy operations are currently being undertaken per year.39 This type of treatment gap can only be minimized by developing many more cost-effective epilepsy surgery programs in resource-poor countries. Of note, a serious surgical treatment gap also exists in the industrialized world, where too few people receive this treatment, and often too late, especially among the underprivileged sections of society.40, 41 Epilepsy surgery centers in high-income countries could learn from the cost-effective epilepsy surgery programs in resource-poor countries, such as the program at the R. Madhavan Nayar Center for Comprehensive Epilepsy Care, to try to decrease the surgical treatment gap.

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Social issues

Throughout the world, misunderstanding of epilepsy and the resulting social stigma often cause more distress to a person with epilepsy than the seizures themselves.42 The progressive emergence of positive public attitudes towards people with epilepsy in developed countries has been demonstrated in knowledge–attitude–practice surveys conducted since 1980.43 Unfortunately, however, in resource-poor countries epilepsy continues to be a highly stigmatizing condition.8, 14, 46, 47 In spite of a high degree of awareness of epilepsy among people in resource-poor countries, the attitudes towards this condition are far more negative than in developed countries, and misconceptions abound. In one study conducted among the highly literate population of Kerala, southern India, for example, 27% of respondents thought that epilepsy was a form of mental illness, 11% objected to their children playing with a child with epilepsy, and 44% objected to employing a person with epilepsy.14 For comparison, the respective percentages in a survey conducted 30 years ago in the US were 3%, 6%, and 9%.43

The psychosocial consequences of the stigma potential of epilepsy are most evident in the case of women with epilepsy of marriageable age in resource-poor countries. Unlike in western culture, in most Asian countries parents have the responsibility to find a suitable match for their daughter and arrange a marriage.48 It is common for the parents of a woman with epilepsy to get her married without informing the spouse and his family that she has the condition.49, 50, 51 Seizure exacerbation often occurs soon after marriage because of nonadherence to AED regimens, and divorce ensues when the presence of epilepsy becomes evident.49, 50, 51 My group studied 82 women in whom onset of epilepsy had occurred before marriage, and we found that 55% concealed and 45% disclosed the history of epilepsy during marriage negotiations.51 The frequency of divorce, separation and disturbed married life were substantially greater in those who concealed their epilepsy than in those who disclosed the condition. By contrast, the women who disclosed their epilepsy were significantly more likely to be in employment than were those who concealed their condition.51 Being employed is important for a woman with epilepsy, as it makes her less dependent on the spouse and family on financial matters, as well as being more confident in making independent decisions.

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Unfinished tasks and pragmatic answers

To bridge the wide treatment gap, various epilepsy care models have been developed and tested in different resource-poor regions. To have any influence, these models should take into consideration the enormous disease burden, the urban versus rural dichotomy in the distribution of limited resources, and negative public perceptions about epilepsy. Consequently, the intervention should start at the community level, by training primary care physicians and health workers to diagnose and treat patients with epilepsy, by ensuring uninterrupted supply of inexpensive AEDs, by establishing a need-based referral network, and by providing education to patients and public alike. In view of the fact that resource-poor regions are markedly heterogeneous, the model should give due consideraion to local and regional sociocultural, economic and political scenarios: what is applicable in one region may be totally unacceptable elsewhere. To have any possibility of the programs being sustained in the long term, a sense of ownership and empowerment must be engendered to the local people. The workability of a proposed model should be tested over a prolonged period. Past experiences from Africa52, 53 and India54 have shown that although community-based epilepsy care programs can be successfully initiated, sustaining them is much harder.

In 1977, the WHO, in collaboration with the ILAE and the IBE, launched the Global Campaign Against Epilepsy to improve the care of people with epilepsy in resource-poor countries.55 To test the Campaign's main goal of reducing the treatment gap for epilepsy, pragmatic demonstration projects were set up in several locations in resource-poor countries.56 The overall aim of these projects is to improve ascertainment and management of people with convulsive forms of epilepsy in rural areas within the existing primary health-care systems.56 The results from the largest of these projects, which enrolled 2,455 patients in rural China, revealed that primary care physicians with basic training could very effectively treat people with epilepsy by prescribing phenobarbital to be taken once daily at night.21 The diagnosis of convulsive epilepsy, confirmed by a local neurologist, was based on the clinical history and on a witness account, without the aid of EEG. Nearly three-quarters of the patients who completed a 24-months course of treatment achieved at least a 50% reduction in seizure frequency, and a quarter became seizure-free. Only a few cognitive or behavioral adverse effects were observed. The probability of retention on phenobarbital treatment was 84% at 1 year and 76% at 2 years.21

Figure 1 depicts a model for epilepsy care in resource-poor countries from the community to the national level, taking into consideration the heterogeneity of epileptic disorders and a need-based approach to their management. Most patients with epilepsy can be treated at primary or secondary care facilities, but a few with difficult-to-control epilepsies will need to be referred to tertiary and comprehensive epilepsy care facilities. To improve care at all levels of the hierarchy of the epilepsy care pyramid, a close interaction between general practitioners, physicians, neurologists and epileptologists, a partnership between governmental and nongovernmental health care agencies, and help from high-income countries in training epilepsy specialists in advanced diagnostic and therapeutic techniques are all essential. Several epilepsy care initiatives recommended by the WHO, the ILAE and the IBE are now being successfully implemented by national and regional chapters and governmental and nongovernmental organizations. For example, the Indian Epilepsy Society issued their Guidelines for the Management of Epilepsy in India (GEMIND) in 2008, focusing on practical issues that will aid general practitioners in diagnosing epileptic seizures, initiating the most appropriate AED therapy, and making need-based decisions to refer patients for specialized care.57

Figure 1 | The epilepsy care pyramid.
Figure 1 : The epilepsy care pyramid. Unfortunately we are unable to provide accessible alternative text for this. If you require assistance to access this image, or to obtain a text description, please contact npg@nature.comThe figure depicts progressively increasing sophistication of care in resource-poor countries, from community to national levels of hierarchy. The number of patients requiring the service decreases as we move up the hierarchy. Abbreviation: AED, antiepileptic drug.

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Conclusions

Nearly 80% of the global burden of epilepsy is borne by the resource-poor countries, which are poorly equipped to tackle the enormous medical, social and economic challenges posed by this condition. The widespread poverty, illiteracy, and inefficient and unevenly distributed health-care systems that are prevalent in these countries have hindered the implementation of epilepsy care programs. In addition, social stigma, myths and misconceptions associated with epilepsy often prevent people with this disease from seeking medical help. Consequently, a large proportion of patients with epilepsy in resource-poor countries never receive appropriate treatment for their condition, and many, although diagnosed and initiated on treatment, soon discontinue the treatment. The high cost of treatment, limited availability of AEDs, and superstitious and cultural beliefs all contribute to the large epilepsy treatment gap in resource-poor countries.

The current large treatment gap for epilepsy in resource-poor countries could potentially be minimized considerably by scaling-up the routine availability of low-cost AEDs, such as phenobarbital. Unfortunately, most patients in resource-poor countries who are on AEDs receive subtherapeutic doses of multiple, and often expensive, drugs simultaneously. The increasing availability of AEDs over the past few years, coupled with inadequate knowledge on the part of primary and secondary care physicians with regard to current trends in epilepsy pharmacotherapy, contributes to this phenomenon of inadequate polytherapy. Owing to the marked scarcity of comprehensive epilepsy care centers in resource-poor countries, only a minority of patients with difficult-to-control epilepsies have an opportunity to undergo presurgical evaluation and surgery.

In addition to improving the care of people with epilepsy at the community level in resource-poor countries, the undergraduate medical curriculum should have more emphasis on this common disorder, primary and secondary care physicians need to be regularly educated about recent advances in its management, low-cost AEDs should be made available to poor patients free of charge, and cost-effective epilepsy surgery programs should be developed in selected centers. High-income countries have a moral and ethical obligation to provide financial, material and human resources to enhance the care of people with epilepsy in resource-poor countries. Gratifyingly, several epilepsy care initiatives recommended by the WHO, the ILAE and the IBE are now being successfully implemented by national and regional chapters and governmental and nongovernmental organizations in these countries.

Review criteria

The published literature reporting epidemiology and medical, sociological, psychological and financial dimensions of epilepsy in resource-poor countries was reviewed through MEDLINE (January 1972 to January 2009), using the search term "epilepsy in developing countries". Of 466 citations retrieved, those in languages other than English, those for which abstracts were unavailable, and those primarily dealing with disorders other than epilepsy (for example, autism, brain infections and infestations, cerebral palsy, eclampsia, head trauma, mental retardation and psychiatric disorders) were excluded. The remaining 209 full-text articles were reviewed and the reference lists of identified articles were searched for further leads.

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Acknowledgments

I wish to thank my colleagues at the R. Madhavan Nayar Center for Comprehensive Epilepsy Care, Trivandrum, Kerala, India for their help in compiling this review.

Competing interests statement

The author declares no competing interests.

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Author affiliations

  1. R. Madhavan Nayar Center for Comprehensive Epilepsy Care, Sree Chitra Tirunal Institute for Medical Sciences and Technology, Trivandrum, Kerala, India.

Correspondence to: K. Radhakrishnan, Department of Neurology, R. Madhavan Nayar Center for Comprehensive Epilepsy Care, Sree Chitra Tirunal Institute for Medical Sciences and Technology, Trivandrum 695 011, Kerala, India
Email: krk@sctimst.ac.in

Published online 19 May 2009

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