Epilepsy: A Comprehensive Textbook
2nd Edition
© 2008 Lippincott Williams & Wilkins
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Chapter 11
Epidemiology in Developing Countries
Nadir E. Bharucha
Arturo Carpio
Amadou Gallo Diop
Introduction
The term developing is taken usually to mean economically developing from poverty toward affluence. Geographically, most such countries are found in Asia, Africa, and Central and South America. However, several countries or parts of countries in these areas are considered quite affluent and correspondingly, some parts of developed countries are economically developing, namely, Eastern Europe.
Although there are no inherent differences between developing and developed countries regarding the biologic and clinical aspects of epilepsy, differences are found in incidence, etiology, social and cultural factors, and systems of health care delivery and treatment.
Developing countries often do not have an organized health care system. Record keeping is generally poor and research minimal. Neuroimaging and drug monitoring facilities may be available, but patients are often too poor to afford what can be obtained. Antiepileptic drugs (AEDs) also may not be available and for various reasons may not be taken. As a result, a large proportion of people with epilepsy do not get treatment. In addition, little accurate scientific data have come from developing countries. In view of this paucity of information, it is easy to assume that the experience of developed countries in treating epilepsy can be applied without modification to developing countries. The purpose of this chapter is to highlight differences in the epidemiology of epilepsy between developed and developing countries, so that such experience can be meaningfully and profitably applied for the benefit of patients.
Incidence and Prevalence
The evaluation of published vital statistics in epilepsy is often complicated by methodologic problems that have not been fully addressed.91,93 Problems that bedevil studies of incidence and prevalence in developing countries include diagnosis, case ascertainment, and definitions of seizures and epilepsy. The early pioneer studies particularly exhibited these weaknesses, although they did provide approximate statistics upon which later investigations could build.
Methodology
Diagnosis
Accurate diagnosis is essential, both at presentation and during treatment. It is mainly clinical, depending on history and examination. Electroencephalography (EEG) contributes to, but does not always confirm, the diagnosis. Accuracy of diagnosis is vitiated by lack of an eyewitness account. A therapeutic trial of antiepileptic drugs is never warranted. Even in developed countries in patients referred with a diagnosis of refractory epilepsy, the rate of misdiagnosis may be as high as 26.1%.103 The most common misdiagnoses are psychogenic, nonepileptic seizures and syncope. In two Indian population-based studies, syncope was frequent in one and psychogenic seizures in another.9,52 Such information is invaluable to a clinician working in India.
Case Ascertainment
In developing countries, concealment of epilepsy for social reasons is common. People also may be genuinely unaware of seizures that present differently from tonic–clonic seizures. Accurate case ascertainment requires a community-based door-to-door survey using a locally validated questionnaire in order to screen the population, with the informed consent of the individuals concerned, the family, and community leaders. If key informants and local medical workers are used, including traditional healers, then case ascertainment will be much better. The capture-recapture method also uses information from different sources to obtain a prevalence ratio that is higher than that obtained from using a door-to-door survey alone.27 Another way of enhancing the yield of a door-to-door survey is to examine a random sample of those people who in the door-to-door survey had been found not to have epilepsy. This enables calculation of the rate of false negatives.86
Definition of Seizures and Epilepsy
In 1993, the International Commission of Epidemiology and Prognosis of the International League against Epilepsy (ILAE) published guidelines for epidemiologic studies.45 These guidelines give definitions of seizures and epilepsy, a classification, risk factors, and recommended measurement indices. These are particularly useful for field studies in developing countries, where facilities for investigation are unavailable. Unfortunately, these guidelines are not always followed.
It should be remembered that acute symptomatic seizures, although not considered epilepsy, are common. Such patients do not need long-term treatment for seizures, but they do need treatment for the acute seizure and for the underlying condition, which, in developing countries, most commonly is neurocysticercosis.75 In addition, the terms idiopathic and cryptogenic epilepsy should not be confused. In a developing country without investigations, making the distinction is not always possible in a field study. Studies should mention the amount of active epilepsy (i.e., those who have had at least one seizure within the past 5 years). These people are important from the point of view of public health.
Table 1 Incidence Studies of Epilepsy in Developing Countries
  Year of publication Authors Incidence per 100,000 person-years
China58 1985 Li et al. 35
Ecuador86 1992 Placencia et al. 122–190
Chile56 1992 Lavados et al. 113
Tanzania89 1992 Rwiza et al. 73
Ethiopia105 1997 Tekle-Haimanot et al. 64
India65 1998 Mani et al. 49
Table 2 Incidence of Epilepsy in the Americas
Author (y) Country Population Case ascertainment Incidencea
Lavados et al. (1992) Chile56 17.694 Record review 95
Placencia et al. (1992)b Ecuador86 72.121 Door-to-door survey 172
Hauser et al. (1993) United States38 516.903 Record review 44
Camfield et al. (1996) Canada13 850.000 EEG 44
EEG, electroencephalogram.
aRate per 100,000, adjusted to the 1990 U.S. population.
bIncidence of a first afebrile seizure.
Source: Carpio A. Perfil de la epilepsia en el Ecuador. Revista Ecuatoriana de Neurologia. 2001;10:20–26.
Incidence is defined as the rate of occurrence of new cases in a specified population per unit time, usually 1 year. The numerator is the number of new cases. The denominator is the number of persons at risk, although usually the total population is used. Prevalence is defined as the proportion of a specified population with the disease at a specified time. Point prevalence is this proportion on a particular day.
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Both incidence and prevalence studies are useful for health service providers, especially in developing countries with few neurologists and 80% of the burden of epilepsy. Incidence studies give clues to risk factors and information about prognosis, but there are few studies from developing countries because they are difficult to carry out.
Incidence
In developed countries, the age-adjusted incidence of epilepsy, defined as recurrent unprovoked seizures, ranges from 28.9 to 53.1 per 100,000 person-years, with most studies falling toward the higher end of this range.42 If single unprovoked seizures are included, higher figures, up to 70 per 100,000 person-years, are obtained. The few available studies in developing countries, none of which is prospective (Table 1), give a range from 35 to 190 per 100,000 person-years. The Ecuadorian study, in which the incidence range was 122 to 190 per 100,000 person-years, includes single seizures and acute symptomatic seizures.86 The incidence of epilepsy in five sub-Saharan African studies ranges from 63 to 158 per 100,000 person-years.87 Comparisons of rates are valid only when age-adjusted to the same population. This has been done for the Americas22 and is given in Table 2. The higher incidence in developing countries may be a consequence of the fact that populations in the developing world are younger and have poorer medical facilities, poorer general health, and a lower standard of living. Specifically, there are more infections of the central nervous system (CNS), especially with cysticercosis, tuberculosis (TB), and human immunodeficiency virus (HIV). Perinatal morbidity, head injuries, and consanguinity are also more common. The relative importance of these factors is unknown.
The graph of age-specific incidence of epilepsy in developed countries is a U-shaped curve, with the highest incidences in those <1 year old and >60 years old. It rises sharply after age 60. In developing countries, the peak incidence occurs in young and middle-aged adults10,56 (Fig. 1). The different age-specific incidence rates in developed and developing countries have two implications. One is that the risk factors may differ. In developing countries infections and parasitic diseases are endemic. The second is the difficulty of comparing studies from countries with differing stages of development and age distribution of the population without age adjustment to a common population as the denominator.
The age-specific incidence of epilepsy in developed countries has been changing over time. There has been a decrease in childhood epilepsy due to better perinatal care, as well as an increase in epilepsy among the elderly because of rising cerebrovascular disease. Such data are not available for developing countries, but that from developed countries suggests the possibility of reducing the present burden by improving obstetric and perinatal care and diminishing future burden by early attention to prevention of cardiovascular disease.
Incidence throughout the world is slightly higher in males than females. The Ecuadorian study found a preponderance of females. Many studies have found no difference. When found a difference, it was slight.
Seizure Type
In general, partial seizures are more common in developed countries than other seizure types, accounting for just over 50%. In developing countries, where symptomatic epilepsy is more common, one would expect partial seizures to predominate. However, in differing circumstances, generalized tonic–clonic seizures tend to be more commonly noted for the following reasons, none of which seems to apply to all situations:
  • The partial onset of a seizure that rapidly generalizes will be missed by the patient or the field worker.
  • Untreated partial seizures may become generalized more rapidly.
  • A questionnaire may not be designed to pick up anything apart from generalized tonic–clonic seizures.
  • There is a lack of the EEG to pick up a focal onset.
There are no population-based incidence studies of epilepsy syndromes from developing countries.
FIGURE 1. Age-specific incidence of epilepsy in the Americas. (From Carpio A. Perfil de la epilepsia en el Ecuador. Revista Ecuatoriana de Neurologia. 2001;10:20–26.)
Table 3 Prevalence of Active Epilepsy in the Americas
Author (y) Country Population Crude prevalence Adjusted prevalencea
Hauser et al. (1991) United States37 56.447 6.8 6.8
Lavados et al. (1992) Chile56 17.694 17.7 18
Placencia et al. (1992) Ecuador86 72.121 8 9
Mendizabal and Salguero (1996) Guatemala70 1.882 8.5 5.6
Nicoletti et al. (1999) Bolivia78 10.124 11.1 12
aRate per 1,000, adjusted to the 1990 U.S. population.
Source: Carpio A. Perfil de la epilepsia en el Ecuador. Revista Ecuatoriana de Neurologia. 2001;10:20–26.
Prevalence
There have been many more studies of the prevalence of epilepsy than of incidence because they are much more easily carried out. Although methodologic differences among these
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studies make comparisons difficult, it seems clear that, unlike incidence, the prevalence of active epilepsy remains within the range of 4 to 10 per 1,000 population throughout the world.46 Higher prevalences have been reported from sub-Saharan African countries (e.g., 35.1 per 1,000 in Benin using the capture-recapture method27 and the prevalence of 49 per 1,000 in Grand Bassa county in Liberia36). A rate of 20 per 1,000 was found among the Wapogoro in Tanzania.50 In South and Central America, a rate of 57 per 1,000 has been found among the Guaymi Indians of Panama.34 In areas with a high prevalence, there is often a strong family history of both epilepsy and consanguinity, possibly as a result of social stigma forcing intermarriage. A large number of studies in India and China suggest a prevalence of active epilepsy of between 4 and 6 per 1,000, similar to that in developed countries.9,54,104,111
As with incidence, rates that are age-adjusted to a common denominator for the Americas allow more meaningful comparisons (Table 3).22
Age-specific Prevalence
Age-specific prevalence rates for epilepsy vary in different studies and are difficult to interpret, possibly because of small numbers and methodologic differences. FIGURE 2 shows age-specific prevalence of epilepsy in the Americas. This is more fully discussed by Hauser in Chapter 5.
Sex
As with incidence, there is a predominance of males, with some exceptions in Africa,89 South America,79 and one study in Pakistan.5
Seizure Type
As is the case with incidence studies and for the same reasons, generalized seizures are more common than partial seizures in developing countries. There are exceptions. In the Ecuadorian study, 49% had partial seizures, which may reflect the input of the specialist medical team. The Parsis had 54.5% partial seizures, a figure possibly resulting from the medical input and the community’s higher level of education. When EEG is used in addition, the proportion of partial seizures increases. In a Ugandan study it rose from 24% to 42%51 and in a Bolivian study from 34% to 53%.78
Socioeconomic Factors
Studies in developed countries have suggested that socioeconomic deprivation increases the risk of epilepsy.33,44,60,73 Studies in Ecuador, Pakistan, and Turkey showed the prevalence of epilepsy to be higher in rural areas, but the reverse was shown in the meta-analysis of the Indian studies.4,5,86,104 In India, poverty is greater in rural areas where it is more difficult to conceal epilepsy. The whole relationship of socioeconomic factors to epilepsy needs further exploration.
Incidence-prevalence “Gap”
The term incidence-prevalence gap refers to the higher incidence of epilepsy in developing countries than in developed countries, whereas prevalence values are similar throughout the world.11,16,57,70,78,86,89 Possible explanations are differences in methodology, namely, inclusion of acute symptomatic seizures as incidence cases in developing countries; the higher mortality rate in developing countries10,15; and higher rates of remission, which would imply a more benign prognosis. There are no answers yet to these speculations, nor will there be until there are
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well-conducted incidence studies and population-based outcome studies from developing countries. Certainly, there need be no further prevalence studies, unless they are designed to look at specific epilepsy syndromes or health status.
FIGURE 2. Age-specific prevalence of epilepsy in the Americas. (From Carpio A. Perfil de la epilepsia en el Ecuador. Revista Ecuatoriana de Neurologia. 2001;10:20–26.)
Prognosis
The prognosis of epilepsy is defined by Hauser and Hesdorffer39 as the risk of recurrence following a first seizure or more seizures; the probability of remission, both spontaneous and with treatment; the risk of relapse following drug withdrawal; and the mortality of epilepsy. It has been suggested that in these countries, the prognosis of epilepsy is different, but few studies of natural history allow comparisons.1,12,16 Methodologic shortcomings have contributed to the uncertainties.39,90
Recurrence after a First Unprovoked Seizure
In developed countries, prognosis for full seizure control is very good. More than 70% of patients achieve long-term remission, most within 5 years of diagnosis.40,61,101 In developing countries, after a first unprovoked seizure, the risk of recurrence is 33% to 37%, similar to that from developed countries.18,26,53,94 Studies from developing countries show that patients with epilepsy secondary to underlying structural causes and with an abnormal EEG have the worst prognosis.18,53,94 The type of seizure and drug treatment used seem not to affect prognosis. Developing countries have produced no published studies of the prognosis of epileptic syndromes.
Recurrence in Newly Diagnosed Epilepsy (or Probability of Remission)
In developed countries, most studies of seizure prognosis or epilepsy prognosis in adults23,40,61,62,96 and children3,99,101 have examined the risk of recurrence following a first unprovoked seizure, but according to ILAE definitions, a single unprovoked seizure does not constitute epilepsy. Very few studies have reported the risk of recurrence after a second seizure.41,100 Hauser et al.,41 in the United States, reported that the risk of a third unprovoked seizure was 73% after 4 years of follow-up. The study by Shinnar and Pellock,100 in the United States, showed that the cumulative risk of a third seizure was 71% at 5 years. Carpio et al.,18 in Ecuador, found that in 340 newly diagnosed epilepsy patients with one recurrent unprovoked seizure, the risk of a third unprovoked seizure was 79% after 4 years of follow-up. Etiology was an independent predictor of recurrence. Patients with idiopathic cryptogenic epilepsy had less risk of recurrence than patients with symptomatic epilepsy (38% vs. 52%, p <0.05). FIGURE 3 shows the probability of seizure recurrence. Multivariate analysis showed no significant differences in recurrence risk due to sex, age, family history of epilepsy, EEG results, or the type of seizure.
FIGURE 3. Probability of seizure recurrence in 289 patients with epilepsy as a function of etiology. (From Carpio A, Hauser WA, Lisanti N, et al. Prognosis of epilepsy in Ecuador: a preliminary report. Epilepsia. 1999;40[Suppl 2]:110.)
Prognosis for Seizure Recurrence in Patients with Neurocysticercosis
Very few studies estimate the prognosis of acute symptomatic seizures. Seizures due to neurocysticercosis (NC) demonstrate prognosis well. In a prospective, cohort study in Ecuador, Carpio and Hauser19 found that 40% of patients had a recurrence. Multivariate analysis showed that the only predictor of recurrence was a change in appearance on the computed tomography (CT) scan. Twenty-two percent of patients in whom cysts disappeared had no further seizures, but 56% of those with persistent cysts had a recurrence (p <0.05). The authors’ conclusion that seizure recurrence is high following a first acute symptomatic seizure due to NC, therefore, seems related to persistence of active brain lesions. However, when the NC lesion clears up, the recurrence risk is low and in keeping with the risk following other brain insults leading to a static encephalopathy. There was no correlation between treatment with antihelminthic agents and seizure recurrence.
Spontaneous Remission and Effect of Treatment on Prognosis
Some patients spontaneously enter remission.57 In a retrospective survey of 460 previously untreated patients attending newly established epilepsy clinics in Malawi, Watts112 indirectly demonstrated spontaneous remission. The study found that as the duration of epilepsy increased, the number of patients with active epilepsy decreased. Thus, remission without therapy is common. This finding is substantiated by an Ecuadoran survey in which 28% of all identified cases entered remission without treatment84 and by Mani et al.66 in a rural community in south India, from which he reported a remission rate of 50% of untreated patients.
Antiepileptic drug trials30,31,85 reported from Nakuru, Kenya, and Ecuador show a generally excellent response to standard therapy. These studies also show that in patients who had not previously received antiepileptic drug (AED)
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treatment, neither the duration of the disease nor the number of seizures before treatment are predictors of outcome. This was corroborated by a more recent study from Yelandur, India.64 Therefore, failing to treat seizures at the earliest possible opportunity does not increase the likelihood of chronicity and agrees with findings from developed countries that for most patients, the chance of remission is not improved by early treatment.68,76 Treatment reduces the rate of recurrence of seizures but does not affect the natural history of epilepsy. There is some conflicting evidence from a hospital-based study in Glasgow, which showed that those who had had 20 or more seizures before starting treatment were more likely to have refractory epilepsy.55 The authors concluded that there was some underlying abnormality of the brain, which rendered the epilepsy refractory from its inception (i.e., frequent seizures could be an indicator of refractoriness rather than cause). The study from Yelandur in India also suggested that those with a lifetime total of more than 30 seizures had less chance of entering remission. More outcome studies are needed from developing countries with populations whose epilepsy is still largely untreated.
Risk of Relapse following Drug Withdrawal
There have been no studies from developing countries.
Epilepsy Mortality
In developed countries, the overall mortality associated with epilepsy is two to three times that of the general population from other causes.7,14,32,49,59,88 In developing countries, it is almost impossible to ascertain the number of deaths due to epilepsy because incidence studies are difficult, death certificates are unreliable, autopsies are not easy to obtain, and the cause of death is not usually known with certainty.10,15 The overall autopsy rate is probably <5% in public hospitals and almost zero in private hospitals. There are few reliable coroners’ reports, and if available, they are incomplete. Migration makes large, prospective, population-based mortality studies of epilepsy very difficult to carry out.
Two Indian population studies of mortality among the Parsis in Bombay and a semiurban community in Vasai10,15 appear to suggest that epilepsy may confer a protective effect against mortality in Parsis, who form a small, urbanized, literate community of higher socioeconomic status than the general Indian population. Comparing these two results is misleading because Parsis with epilepsy probably take better care of their health than those without it, and cases studied were mainly prevalent, so the result was biased in favor of survivors whose epilepsy was less active than that of the patients in Vasai. The methodologic advantages of the Parsi study are that it is a population study in which the diagnosis of epilepsy was made by a neurologist and follow-up is virtually complete. Comparison of the Vasai and Parsi studies suggests that the poorer, rural population with epilepsy has a much higher mortality rate than the urban one. Factors possibly responsible for this are being explored elsewhere.
In Ecuador, a prospective cohort study of 412 patients with newly diagnosed epilepsy gave a crude standardized mortality ratio (SMR) from all causes of 6.3.15 The age-specific SMR at entry is summarized in Table 4. The overall mortality of epilepsy in Ecuador is higher than reported in the general population of a developed country. Present cohort studies of sudden unexpected or unexplained deaths in epilepsy (SUDEP) have produced rates varying from 1.5 to 9 per 1,000 patient-years.32,49,59,88 Rates depend on the methods used and the population studied. The Ecuadorian SUDEP rate of 2.6 per 1,000 patient-years was nearly ten times that of 0.3 per 1,000 patient-years in an incidence study from Rochester, Minnesota,43 and as high as those reported in patients with severe epilepsy. Mortality rates may be high because only the severe cases were picked up.
Table 4 All-cause Mortality in Patients with Epilepsy In Ecuador
Age Patients with epilepsy Expected deathsa Observed deaths SMRb
0–19 268 0.56 4 7.7
20–59 102 0.31 2 7.1
>60 9 0.41 1 3.2
Total 379 1.28 7 6.3
SMR, standardized mortality ratio.
aCalculated by multiplying the number of person-years with epilepsy with the corresponding mortality rate of the Ecuadorian general population divided by 100.
bObserved number of deaths divided by expected number of deaths.
Source: Carpio A, Bharucha NE, Jallon P, et al. Mortality of epilepsy in developing countries. Epilepsia. 2005;46(Suppl 11):28–32.
It is also possible that the risk of death was overestimated because the less severe, new-onset cases of epilepsy were not ascertained at hospitals. This affects the distribution of cause of death—those patients lost to follow-up may have had different causes of death from those who were followed. Also, small numbers prevent comparison of SUDEP rates by seizure type, etiology, age, or sex. As expected, only one patient had an autopsy. On the other hand, in cohort studies the diagnosis of epilepsy is well documented and definitions and analytic procedures are current.
In Martinique in the Caribbean, death certificates were used to follow a cohort for 1 year.15,49 The mortality rate was 5.73 per 100,000 population and the SMR was 4.25. There were no data concerning cause of death or the exact relationship of epilepsy with the death.
In summary, it seems that mortality of epilepsy in developing countries is generally higher than the mortality reported in developed countries. The SMR ranges broadly from 0.76 in a population study of a select community in India to 6.3 in a prospective cohort study in Ecuador. It is incorrect to generalize from such selected populations.
Table 5 Distribution of Epilepsies and Epilepsy Syndromes in Patients with Newly Diagnosed Unprovoked Seizures (All Age Groups)
  Carpio et al., 2001 (Ecuador17)a Manford et al., 1992 (England63)b,c Jallon et al., 48)d
  310 (%) 594 (%) 1,016 (%)
1. Localization related 179 (58) 252 (42) 482 (47)
   1.1 Idiopathic 10 (3) 7 (1) 48 (5)
   1.2 Symptomatic 84 (27) 96 (16) 137 (13.5)
   1.3 Cryptogenic 85 (27.5) 146 (24.5) 297 (29)
2. Generalized 93 (30) 66 (11) 343 (34)
   2.1 Idiopathic 75 (24) 55 (9) 278 (27)
   2.2 Cryptogenic or symptomatic 7 (2.3) 0 (0) 39 (4)
   2.3 Symptomatic 11 (3.5) 11 (2) 26 (3)
3. Undetermined whether focal or generalized 38 (12) 190 (32) 177 (17)
aCarpio A, et al. Etiology of epilepsy in Ecuador. Epilepsia. 2001;42(Suppl 2):122.
bManford M, et al. The National General Practice Study of Epilepsy: the syndromic classification of the ILAE applied to epilepsy in the general population. Arch Neurol. 1992;49:801–808.
cExcluding patients with special syndromes.
dJallon P, et al. Newly diagnosed unprovoked epileptic seizures: presentation at diagnosis in CAROLE study. Epilepsia. 2001;42:464–475.
Table 6 Distribution of Epilepsies and Epilepsy Syndromes in Prevalent Unprovoked Seizures (All Age Groups)
  Senanayake, 1995 (Sri Lanka97)a Murthy et al., 1998 (India74)b,)c ILAE, 1995 (Italy47))d
  1,250 (%) 2,531 (%) 6,889 (%)
1. Localization-related 917 (73) 1,591 (63) 4,323 (63)
   1.1 Idiopathic 24 (2) 18 (1) 375 (5.4)
   1.2 Symptomatic 133 (11) 997 (39) 1,991 (29)
   1.3 Cryptogenic 760 (61) 456 (23) 1,957 (28.4)
2. Generalized 228 (18) 299 (12) 1,750 (25)
   2.1 Idiopathic 214 (17) 162 (6.5) 1,272 (18.5)
   2.2 Cryptogenic or symptomatic 0 (0) 64 (2.5) 287 (4)
   2.3 Symptomatic 14 (1) 73 (3) 152 (2)
3. Undetermined whether focal or generalized 104 (8) 503 (20) 227 (3)
aSenanayake N. Classification of epilepsies and epileptic syndromes using the 1989 ILAE classification: a hospital-based study of 1,250 patients in a developing country. Epilepsia. 1995;8:33–40.
bExcluding special or unclassified syndromes.
cMurthy JM, et al. The syndromic classification of the ILAE: a hospital-based study from South India. Epilepsia. 1998;39:48–54.
dItalian League Against Epilepsy. First Italian Observational Data Bank on Epilepsies. General Results after One Year of Data Collection.
21st International Epilepsy Congress, Sydney, Australia, September 1995.
Etiology and Risk Factors
In developing countries, analytic epidemiology designed to establish associations and determinants of epilepsy has been scarce. Comparing results of studies of etiology is difficult because of differences in definitions and lack of diagnostic criteria.16 Most studies lack information on the latency between the first acute symptomatic seizure and the first unprovoked seizure, and the age at onset of seizures and age at diagnosis.
In studying etiology, it is necessary to use incident cases and not prevalent cases, because one cannot assess the importance of potential etiologic factors that preceded the onset of epilepsy from those which occurred after the disease developed. Cause and effect become confused.20
In children, the proportion of patients with generalized idiopathic epilepsy is fairly similar in studies from Ecuador (29%), the United States (21%), and Finland (22%).6,17,102 However, symptomatic localization-related epilepsies are a group of more diverse syndromes, probably due to different risk factors for epilepsy in developed and developing countries.
Tables 5 and 6 show the reported frequencies in all age groups of localization-related epilepsies in the series from
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developing countries: 58% in Ecuador, 63% in India, and 73% in Sri Lanka.22,74,97 Differences are probably due to methodologic differences. The Ecuadorian study included only newly diagnosed patients, whereas the Indian and Sri Lankan studies used prevalent cases. The frequency of localization-related epilepsies in newly diagnosed epilepsy in developed countries is lower: 42% in England and 47% in Switzerland.48,63 In childhood, localization-related epilepsies account for 55% in India in newly diagnosed unprovoked seizures, similar to the reported frequencies in the United States of 58% and Finland of 61%.6,98,102
Symptomatic localization-related epilepsy in all age groups was 39% in India, much higher than the reported frequency of 13.5% from Switzerland and 29% from Italy.47,48,74 However, the frequency of 27% in the Ecuadorian study and 27% in another Indian study17,98 are similar to those from developed countries.
Generalized epilepsies and epilepsy syndromes accounted for 12% of epilepsy in India and 30% in Ecuador, probably related to the patient populations studied. However, in Indian children, generalized epilepsies and epilepsy syndromes accounted for 35% of all epilepsy.74 Idiopathic epilepsy accounted for 24% of epilepsy in Ecuador, similar to the 27% in Switzerland and 18.5% in Italy.17,47,48
The diagnostic categories for age-related partial and generalized idiopathic epilepsies apply to all countries. The overall frequency of symptomatic and cryptogenic, localization-related epilepsies is similar, but there are differences within the symptomatic group because of differing risk factors.
Despite etiologic differences in developed and developing countries, the ratio of idiopathic/cryptogenic to symptomatic epilepsy remains fairly constant throughout the world. In Rochester, 65.5% of newly diagnosed cases of epilepsy were idiopathic.38 Developing countries show a similar proportion
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of idiopathic cryptogenic (60% to 70%) and symptomatic epilepsy (30% to 40%),20 but the causes of the symptomatic group are different. In developed countries, cerebrovascular diseases account for a significant proportion of symptomatic epilepsy,38 whereas perinatal brain damage, neurocysticercosis, CNS infections, and traumatic brain damage are the most frequent risk factors in developing countries.1,12,16
Etiology and risk factors for epilepsy vary with age and geographic location. Congenital, developmental, and genetic conditions are mostly associated with epilepsy in childhood, adolescence, and early adulthood. Head trauma, CNS infections, and tumors may occur at any age and may lead to epilepsy, although tumors are more likely over age 40. Cerebrovascular disease (CVD) is the most common risk factor for epilepsy in people over 60 years of age. In some parts of developing countries, endemic infections, such as malaria, neurocysticercosis, paragonimiasis, and toxocariasis, are associated with epilepsy.8,71,81,87,89
Few case-control designs have been applied in developing countries. These studies found febrile seizures to be a significant risk factor. Some studies from India also suggested that head injury, development delay, and family history of epilepsy were significant risk factors.9,83,92
Prenatal and Perinatal Pathology
Poor prenatal or perinatal care resulting in brain damage is often claimed to be a reason for the high prevalence of epilepsy in the tropics,1,81,97 but few tropical studies define inclusion criteria for this category. In developed countries, the presence of prenatal and perinatal events does not appear to be associated with the occurrence of childhood epilepsy when children with cerebral palsy and mental retardation are excluded.39
The American Collaborative Perinatal Project,77 which prospectively followed a large population, found that 14% of children who had nonfebrile seizures also had cerebral palsy to some degree. Conversely, 21% of children with cerebral palsy had had at least one nonfebrile seizure by the age of 7 years. However, seizure disorders in children of low birth weight without cerebral palsy were not found to be significantly more frequent. Of the late pregnancy and birth conditions evaluated, including conditions considered to be associated with anoxia and markers of fetal distress, none was found to be an important antecedent of seizure disorders in children without motor handicap. Among factors observable in the neonatal period, delay of the first cry by 3 minutes or longer, abnormality of tone, and neonatal seizures or meningitis were leading predictors of later seizures.
We cannot extrapolate these findings to the situation in developing countries, where health care systems are quite different. In developing countries, most deliveries in rural areas are conducted by traditional birth attendants, families are large, and the frequency of preterm deliveries is at least twice as high as in developed countries.1,12 Many mothers are malnourished and exposed to a variety of infections that may affect the baby in utero or at the time of delivery. These factors need further study to evaluate their contribution to perinatal brain damage. In developing countries perinatal brain damage accounts for 13% to 14% of later epilepsy in children.24 In a hospital-based study from south India, static encephalopathy related to perinatal brain damage accounted for 9% of all later epilepsy and 13.5% of remote symptomatic epilepsies.74
Infections of the Central Nervous System
Infectious and parasitic diseases are the most common causes cited for the higher incidence of seizures in developing countries. Acute infections of the CNS are significant risk factors for both acute symptomatic seizures and epilepsy. In a retrospective cohort study from Rochester, Minnesota, CNS infections increased the risk for the development of unprovoked seizures by 11-fold.38 In Ecuador, infectious diseases, mostly TB plus bacterial meningitis, preceded development of epilepsy in 4.5% of cases.17 Epilepsy followed tuberculous meningitis in 8%.16,20 Seizures are also common manifestations of intracranial tuberculomas. There are no reliable data available on long-term sequelae of bacterial meningitis, endemic or epidemic.
CNS toxoplasmosis is common in patients with acquired immunodeficiency syndrome (AIDS).12 As AIDS incidence increases in tropical countries, toxoplasmosis may become a more important cause of epilepsy. Epilepsy is a well-recognized consequence of toxoplasmosis in about 25% of affected people.1,12 Mental retardation and seizures follow brain damage associated with congenital toxoplasmosis. In an institution for mentally handicapped children, 6.8% of patients with epilepsy had congenital toxoplasmosis.20
Neurocysticercosis
Studies of selected hospital patients with seizures or epilepsy in some developing countries report NC as its cause in 30% to 50% of patients.1,12 A prospective multicenter study in Ecuador17 found that NC was a risk factor in 8.3% of newly diagnosed patients with epilepsy. Other studies, where acute symptomatic seizures were excluded, found only 5.3% to 11% of patients with epilepsy had NC.2,67 Most have acute symptomatic seizures that do not develop into epilepsy. This high incidence probably occurred because of failure to differentiate between epilepsy and seizures.19 Although it is one of the most frequent antecedents among the symptomatic group, NC is not the main cause of epilepsy.
Surprisingly, the proportion of epilepsy associated with cysticercosis discovered using immunologic tests is considerably lower than that found using CT. Only 12% of patients with epilepsy attending an outpatient clinic in Peru had serologic evidence of Taenia solium by enzyme-linked immunotransfer blot (EITB) test.21 There are also clinical inconsistencies in the link between epilepsy and NC. Parasite location may be remote from the apparent epileptogenic region.67 There is no correlation between the burden of cysticercal lesions and the severity of epilepsy. Patients with severe refractory seizures may have only one calcified lesion, whereas other patients may have multiple cysts or calcifications but no epilepsy. Since NC and epilepsy are common diseases in most developing countries, a causal as well as fortuitous relationship between the two conditions might exist independently.21,67,81,106
Recent new studies have not modified this position. A report from Brazil94 concluded that the presence of calcifications on CT does not increase the risk of seizure recurrence. A Brazilian study106 confirms the good prognosis of parenchymal NC. The authors point out that, if it is assumed that NC can be an incidental finding in a considerable number of patients with epilepsy in endemic regions, inflammatory processes related to parasitic infection, death, degeneration, and calcifications in the brain of the host do not significantly aggravate the cognitive deficits observed in medically refractory mesial temporal lobe epilepsy. A study in rural Ecuador28 affirms that NC is associated with one in three cases of epilepsy and is possibly the cause of the excessive proportion of epilepsy in that population. However, results were not statistically significant and only 3 (8%) of 24 patients with epilepsy had “definitive” NC. A community survey72 concluded that brain CT abnormalities compatible with NC were more frequent in individuals with seizures and in those with positive immunoserologic assay (EITB) for cysticercosis. Most of the patients who were diagnosed with NC in this study had only calcifications (half of them had just one calcification); however, it is well known
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that brain calcifications do not necessarily mean that a patient has NC.
The small numbers of the above studies do not allow generalizations. So far, there are no case-control or prospective studies in which CT scan has been used for providing information on the proportion of NC patients or seropositive individuals that will develop seizures. In addition, some authors have reported an association between seizures and NC, based on positive serum antibodies to T. solium/cysticercosis; unfortunately, the presence of antibodies may indicate only previous exposure to or infection with the parasite, but not necessarily brain infection.35
Cerebrovascular Diseases
Cerebrovascular disease in developed countries is the most commonly identified cause of epilepsy, accounting for about 11% of all new cases and about one third of cases with any identifiable cause.39 However, in Ecuador, cerebrovascular diseases accounted for only 4.4% of new cases.17 In developing countries, cerebrovascular diseases are thought to account for only a small proportion of epilepsy.12
Other Tropical Diseases
Malaria is endemic in tropical America, Africa, and some Asian countries. Acute cerebral malaria encephalopathy,71 despite appropriate treatment, still carries a mortality of 22%.108 Epilepsy has long been recognized as a late sequela of cerebral malaria.97 Pathologic examination of the brain in fatal cases has shown severe vasculopathy with hemorrhages, and granuloma of Dürck formed by astroglial reaction.108 The lesions may act as epileptogenic foci in those who survive, giving rise to chronic epileptic seizures. A special relationship has been described between cerebral malaria and febrile convulsions. Together they are responsible for 5% of pediatric emergency consultations in endemic areas in central Africa and the Amazon forest.12,20 However, it is difficult to ascertain whether these convulsions are in fact febrile seizures or secondary to cerebral malaria.
In schistosomiasis, seizures occur frequently during the acute meningoencephalitic phase, but only 2.4% to 3.8% of patients with confirmed cerebral deposition of ova have seizures during the chronic phase.12 In paragonimiasis, another trematode infection prevalent in South America, the lung is the primary site of infection, but the brain is often involved. Seizures, usually focal motor, are the most common manifestation of cerebral paragonimiasis.12,16
American trypanosomiasis or Chagas disease is a public health problem in rural areas of Central and South America.79 CNS involvement is secondary to cerebral embolization from cardiac blood clots. Immunologic reactions probably underlie the pathology of the disease, including diffuse meningoencephalitis with edema and arachnoiditis. These may cause late-onset epilepsy, with a high frequency of partial seizures.12,16
Approximately one in three patients with cerebral hydatid cysts develops epilepsy.98 Signs of focal cerebral involvement or of raised intracranial pressure are found at the onset of epilepsy in all patients. Seizures secondary to cerebral amoebiasis and cerebral toxocariasis have also been described,20 but their contributions to the etiology of epilepsy require further study.
Principles of Evaluation
Principles of evaluation and treatment of a patient with epilepsy are the same the world over. In developing countries, however, where investigatory facilities are minimal, a diagnosis of epilepsy is essentially clinical. A first-hand, eyewitness account from the time of onset of symptoms is necessary. Often, description alone may be inadequate and it may be more helpful if the witness is able to act out the movements and sounds of the seizure. (It should be carefully considered whether the patient is to be present during this act, as it may be embarrassing.) Pseudoseizures, hyperventilation, and other nonepileptiform disorders should be excluded. Careful enquiry both from the patient and observer about symptoms and signs at the onset will help to identify more partial seizures than are usually diagnosed in developing countries. If available, EEG should be used judiciously when the onset of the seizure occurs during sleep, when the seizure appears to be primarily generalized, and to differentiate petit mal or absence seizures from complex partial seizures in children.
The indications for neuroimaging are generally the same throughout the world. Neuroimaging is done primarily when a focal lesion is suspected. If the suspected lesion is nonprogressive or not amenable to definitive treatment, as with cerebral palsy and mental retardation, neuroimaging should be withheld. It will not alter management. In developing countries, there are exceptions to this policy because parasitoses can appear at any age, often with a primarily generalized seizure, so neuroimaging should be done more often to identify these infections. Other investigations for parasitoses include examination of urine, stool, and blood; tissue biopsy to look for the parasite by microscopy; skin tests; serologic methods; demonstration of antigen by chemical methods; and DNA or RNA probes. The main problems with serologic tests are that their accuracy or validity may not be known in a given location and they may not distinguish between past and present infection. Because parasites are often confined to the CNS, examination of cerebrospinal fluid may also be necessary.
Treatment
The major issues relevant to treatment and prevention in developing countries are discussed in the section on Providing Health Care later in this chapter (see Section XII).
Pharmacologic Methods
To ensure compliance from their patients, allopathic doctors must be aware of traditional cultural beliefs and practices in their areas and give simple accounts of the illness and what patients may reasonably expect from drug treatment. The choice of drug depends on availability and cost. Phenobarbital and phenytoin are commonly available and inexpensive and are the drugs used most often in developing countries. A community-based trial of phenytoin versus phenobarbitone in children in rural India found both drugs to be equally acceptable.82 Both have associated problems, however. Phenobarbital is sedative in adults and induces hyperactivity in children. If stopped suddenly for any reason, it produces more withdrawal seizures than other AEDs. In many places, it is unavailable without prescription and only a few stores stock it. In developing countries, the main problem with phenytoin is that it is usually available only in 100-mg tablets, so adjusting the dose for children is neither easy nor accurate. Drug-level assays are needed for all AEDs but are most necessary for phenytoin, because of the pharmacokinetics of its metabolism. Chronic phenytoin intoxication may lead to cerebellar atrophy, encephalopathy, or both. Gingival hyperplasia is a problem in people who already have poor oral hygiene.
Widely available but more expensive choices than phenobarbital and phenytoin are carbamazepine and sodium valproate.
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If used, they too entail problems. Use of sodium valproate requires liver function tests and serum ammonia estimation, particularly in children who are mentally retarded. Rarely, carbamazepine therapy can depress one or all of the three blood elements and cause hepatic dysfunction. If suggestive symptoms should arise, patients are asked to seek immediate medical attention and have a blood cell count. Anemia and hepatitis are already common problems in developing countries. Especially in rural areas where laboratory facilities are unavailable, it may be impossible to differentiate problems of AEDs from concurrent illnesses.
Dosages of AEDs in developing countries follow the milligram per kilogram of body weight scale used in developed countries. In general, however, because high doses often are not tolerated, the initial dose is lower and increased gradually if necessary. Malabsorption syndromes, malnutrition with hypoproteinemia, and hepatic dysfunction may interfere with the pharmacokinetics of AEDs. Calcium and vitamin D supplementation are desirable for all patients taking phenytoin and other drugs capable of inducing hepatic enzymes.80 In those susceptible to rickets or osteomalacia, they are essential. Folic acid supplementation is particularly important for young women likely to become pregnant. Ideally, this should be given with vitamin B12 to prevent precipitating subacute combined degeneration in a B12-deficient vegetarian community, such as in India. Patients are often unwilling to take so many tablets for a long period of time.
The newer AEDs clobazam, oxcarbazepine, lamotrigine, gabapentin, topiramate, levetiracetam, and pregabalin are available, and indeed locally manufactured, and sold in countries with a developed pharmaceutical industry, as in India. Many are still unaffordable to most of the population, so cost should always be considered before prescribing them, particularly since expenses will have to be borne out of pocket and parents will always make sacrifices for their children.
Nonpharmacologic Methods
Epilepsy surgery, vagus nerve stimulation, and a ketogenic diet are alternatives to pharmacologic treatment. Vagus nerve stimulation is no more effective than medical treatment and is very expensive, and the device requires maintenance. A ketogenic diet is difficult to sustain. Epilepsy surgery, in appropriately selected patients, renders the patient seizure free in 70% to 80% of cases. It should be considered early to decrease medical and psychosocial consequences of repeated seizures and ultimately to diminish the cost of continued expensive medication.107
Pregnancy Register
Pregnant women with epilepsy, whether on or off treatment, should be entered in a national pregnancy register, which should conform to the methodology of established registries in developed countries. The aim of this is to assess the risk of major congenital malformations, and it will allow optimal treatment of pregnant women with epilepsy under differing local circumstances, with due consideration to both mother and baby.
Compliance
Ensuring compliance is a difficult matter in any country. Pregnant women, and sometimes their doctors, may fear that AED treatment will harm the fetus. Parents may fear that AEDs will retard their child’s development. Students may be made sleepy from the AEDs, preventing them from studying at night. Newly married women may have concealed their epilepsy from their husbands and fear being caught taking medication. In developing countries people believe that allopathic medicine produces unacceptable side effects and they fear that they will become dependent on their drugs. If the drugs do not fulfill expectations, the patient may change doctors and treatment, or turn to traditional healers. If the patient wishes to go to a traditional healer while receiving allopathic medicine, this should not be discouraged, unless traditional methods require taking oral medicines that may contain unknown quantities of anticonvulsant. In addition, some traditional medicines have their own side effects, which the patient may attribute to allopathic medicines. Conversely, if benefits occur with allopathic therapy, the patient may attribute any improvement to the traditional methods of treatment and stop taking the allopathic drugs alto-gether.
As in developed countries, compliance can be assessed by interviewing the patient and by taking pill counts. Techniques to monitor AED blood levels are not always available and not always standardized.
Prevention, Safety, and First Aid
In addition to compliance, other general measures that will help patients live with epilepsy should be explained and emphasized. These include getting adequate rest and avoiding alcohol, fasting, and stress. In developing countries, religious fasts are common and often prolonged. Lack of food alone may provoke seizures during these times and the patient may also omit taking medication. Activities that may endanger the patient or others, such as cooking beside an open fire, standing in the doorway of a train, or driving, should be avoided as much as possible. Alternatives should be worked out with the patient.
The family of the patient needs to be made aware of first-aid measures. During a seizure, the patient should be turned on the side in a semiprone position, head down if possible, to allow drainage of secretions and vomitus. Nothing should be put in the mouth, as this obstructs the airway and might result in injury to the patient’s teeth or tongue. If there is status epilepticus, the patient should be hospitalized as soon as possible. Rectal diazepam or buccal midazolam may be used at home.95
Treating the Cause of Epilepsy
Finally, the cause of the epilepsy needs to be treated. In developing countries, this mainly involves treating the chronic parasitoses and tuberculomas. The management of neurocysticercosis in particular remains difficult. Treatment depends on the number and location of the cysts and whether they are vesicular, degenerating, or calcified.
Diagnosis of the cause is mainly by neuroimaging with some help from serology. The treatment armamentarium consists of antiepileptic drugs, cysticidal agents, steroids, and surgery. The choice of treatment is a delicate and controversial matter.35
Prevention
Epidemiology has contributed less to our knowledge of etiology and prevention of epilepsy than it has to that of lung cancer and stroke. In over half the cases of epilepsy in developing and developed countries, no cause can be found. If all cases of known cause were prevented, more than half the total number of cases would still occur. When the etiology is known, seizures can be prevented by combining treatment of known risk factors in the community with prophylactic AED therapy.
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Providing Health Care
Health Care Delivery
Epilepsy is treatable with relatively cheap medication, but the treatment gap in developing countries is still very high, up to 80% to 90%. Epilepsy has not only medical, but also psychologic, sociologic, economic, and cultural dimensions. Of particular importance in developing countries is symptomatic epilepsy related to endemic parasitic and infectious diseases, head trauma, and poor perinatal care. Levels of education, ability of health care workers and patients to communicate, and lack of availability of resources for the health care system influence the management of epilepsy and related problems. Few developing countries have established programs and institutions to deal with these problems.
Costs
The cost of providing care in developing countries is a major issue. Phenobarbital and phenytoin are the cheapest drugs, although the latter is available only in some countries. One of these two drugs is prescribed in 65% to 85% of treated patients with epilepsy,29 and the drugs are available at most health centers and/or community pharmacies. The annual cost of phenobarbital, at 100 mg/day, ranges from $4 to $16, compared with $3 to $30 for phenytoin. Other less widely prescribed drugs including carbamazepine (CBZ), valproate (VPA), and injectable diazepam (DZP) are 6- to 12-fold more costly.113
Sub-Saharan Africa is the home of 11% of the world population, but it benefits from only 1.3% of world income. In 2001, the mean Gross Domestic Product per capita in the sub-Saharan countries was $1,690, ranging from $12,508 (Seychelles) to $490 (Sierra Leone), versus $24,973 in the developed world. Among the 40 least wealthy countries in the world, 32, or 80%, are in Africa.110
The provision of AEDs through government-funded schemes is therefore impossible in some cases. Not only do governments lack resources, but also people are unable to pay for AEDs from their own incomes. Between 61% and 72.8% of the population in the poorest countries of the world live on less than $1 per day.110
Phenobarbital will remain the only treatment until drug companies bring down their prices and make their products affordable to small health centers in the developing world.
Treatment Gap
Treatment gap has been defined by the International League Against Epilepsy as “the difference between the number of people with active epilepsy and the number whose seizures are being appropriately treated in a given population at a given point in time, expressed as a percentage.” This is estimated at between 80% and 90% in developing countries. While cost is a major issue, other factors such as inadequate planning at government level, poor infrastructure, insufficient availability of drugs, and scarcity of trained medical personnel, particularly in rural areas, are also significant. Cultural factors also play a major part.
Cultural Influences and Traditional Medicine
In many developing countries, epilepsy is perceived as a manifestation of supernatural forces, caused by ancestral spirits or attributed to possession by evil spirits. People with epilepsy are often stigmatized. Stigma generates a hidden burden, which discourages patients from seeking another diagnosis and the care they need and deserve. Furthermore, discrimination against people who have seizures excludes them from adequate employment. In some societies, fear of “contamination” by the breath, blood, sperm, and genital secretion of people with epilepsy produces unacceptable responses such as ignoring or avoiding a person having a seizure, which may lead to death, drowning, burns, and other injuries. Children with untreated epilepsy often face discrimination and isolation at school, resulting in low self-esteem and underachieve-ment.
Sociocultural factors, and in particular what the person believes is the cause of his or her epilepsy,69 can explain why patients often first seek advice from the many traditional therapists and healers.25 In developing countries, traditional healing is usually the first treatment sought. Sometimes between 6.5 and 13.4 years elapse before the patient receives allopathic treatment.25,29,109,112 Traditional healing should not be completely discredited, since often patients obtain secondary benefits such as reassurance and emotional support. It should be integrated with Western methods to provide full support and care for the patient and his or her family.31 Sharing information with and offering training to traditional healers has shown that working in close connection with traditional healers and community and religious leaders promotes acceptance of the primary health care worker by the community and enables him or her to modify certain harmful practices. The challenge is how to marry the differing convictions that determine traditional and scientific treatment concepts.
Role of Physician and Paraprofessionals
In those developing countries that have specialists in the neurosciences, there is a very low doctor-to-population ratio. In Europe there is one neurologist for 100,000 people, but in developing countries the ratio is one neurologist for up to 6 million people. The World Health Organization (WHO) recommends one neurologist for 50,000 people. In developing countries, everyone qualified should be actively involved in health care delivery. In addition, diagnostic centers are very few and mostly located in capital cities. Such a shortage of professionals makes the role of paramedical staff essential, prevention of epilepsy paramount, and coordination of government programs imperative.
Since complications in the peripartum period are the leading cause of future epilepsy in developing countries, the epilepsy program should be included in plans for primary health care at both government and community levels. It should also be coordinated with other public health programs, such as antenatal and postnatal care and pediatric health in the first 10 years of life, including immunization programs. Prevention of head trauma and alcohol and drug abuse should also be priorities.
Early detection and appropriate treatment will reduce disabilities caused by epilepsy. Publicizing, preventing, and managing those infectious diseases that affect the brain and prevention of consanguineous marriages should also be considered priorities for public health. Eradication of neurocysticercosis should receive special attention.
The following goals are essential:
  • To ensure availability of phenobarbitone to patients.
  • To promote the use of generic drugs and carry out quality control checks from time to time.
  • To continue to permit use of traditional medicine that is not dangerous, but ensure that the patient keeps on taking AEDs.
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  • To establish drug banks: An agreement between ILAE/International Bureau for Epilepsy (IBE) national chapters and drug suppliers could ensure availability and supply of cheap AEDs; such a system could employ its own funding mechanism and become sustainable and relatively autonomous.
  • To establish specialized investigatory facilities with an EEG machine, a CT scanner, and a drug monitoring laboratory.
Public and Private Agencies
To deal with the gradual decline in the provision of health care services as a result of poverty in African states, the WHO resolved to revitalize district health systems by establishing community-based management centers and employing only essential drugs to combat major public health problems. This was called the Bamako Initiative. Phenobarbital for epilepsy is on the list of essential drugs. As it is cheap and taken only once a day, its use should be explained and it should be prescribed to most patients with epilepsy. Fifteen years down the line, much progress has been made, but much is yet to be done. There are operational problems caused by poverty, lack of human resources, demographic pressure, sociocultural differences, and recurring emergency situations. The next step will be to include a larger number of drugs, particularly those that are in generic form, with effective, sustainable quality control. Public and private sectors need to cooperate to expand drug coverage.
Community-based Epilepsy Programs
The treatment of epilepsy in developing countries is not only a medical, but also a political issue. Widespread poverty, stigma, and discrimination in employment and education against people with epilepsy obstruct the effective delivery of services and treatment of patients. These wider issues need to be addressed at both the individual and the societal level.
Summary and Conclusions
The essential components of an effective strategy for addressing epilepsy in developing countries are as follows:
  • Adequate financing.
  • Changing laws and community attitudes.
  • Making people with epilepsy and their families aware of their rights and what treatment should be available to them.
  • Actively providing psychosocial rehabilitation, educational opportunities, and income generating projects, including incorporation of traditional with allopathic approaches to treatment.
  • A public education program to ensure that awareness of and sensitivity to the needs of people with epilepsy permeate education, employment, health, and the legal system.
  • Adopting a multidisciplinary approach involving patients and their families interacting with health and social workers; this would be promoted by government and delivered through a range of agencies to include community leaders, pharmaceutical companies, nongovernmental organizations (NGOs), and international groups.
However, these issues also need to be tackled at the global level. The Global Campaign Against Epilepsy—Epilepsy out of the Shadows is an international and collaborative initiative set up by the IBE, ILAE, and WHO. With the support of governments, interested UN agencies, international institutions, NGOs, and the pharmaceutical industry, the ultimate aim of the Global Campaign is to free every person in the world who has epilepsy from the burden of any preventable or manageable epileptic disorder. This two-part strategy consists of the provision of a platform for international awareness and assisting health departments to develop national epilepsy programs.
By comparison with developed countries, epilepsy in developing countries presents unique problems due to differences in incidence, etiology, cultural, and socioeconomic factors. In addition, the health care delivery systems in these countries are often inadequate, poorly organized, excessively bureaucratic, and underfinanced. Although there are no significant differences in most parameters of epilepsy prognosis, mortality seems to be higher than in developed countries. Developing countries need more incidence studies, prospective studies on large cohorts with recent-onset epilepsy to determine mortality, and analytic case-control studies on incidence cohorts. Prevention of cerebral infections by immunization and control of parasitic diseases through improved sanitation, hygiene, and elimination of the responsible vectors together with prevention of head injuries will reduce the incidence of new symptomatic cases, as will good maternal and child care. A major impediment to raising the standard of medical care is the unavailability of physicians or other trained personnel and the lack of modern diagnostic and treatment facilities, especially in rural areas. A multidisciplinary approach involving public and private agencies, professionals, paraprofessionals, and even traditional healers is required in many developing countries. Community-based epilepsy programs should be incorporated in national health care programs. Finally, a continuing challenge is the treatment gap, which is estimated to be 80% to 90% at any one time in some countries. It needs to be addressed by measures such as the Global Campaign, which increase awareness of epilepsy and strengthen national epilepsy programs.
Acknowledgments
The authors gratefully acknowledge Dr. Roberta Harrison Raven for considerable help in editing this chapter and Dr. W. Allen Hauser for reviewing parts of this chapter.
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