Selected Papers: Epilepsy in Asia.

Prevalence and Patterns of Epilepsy in India.Purpose:To estimate the prevalence of epilepsy in India by meta-analysis of previously published and unpublished studies and determine the pattern of epilepsy by using community-based studies.Methods:As many as possible previously published and unpublished studies were identified on the prevalence of epilepsy from various parts of India by using multiple search strategies. The studies were assessed regarding the methods and definitions (population structure, method of case ascertainment, sensitivity and specificity of screening instrument, whether validation resurvey was done, definitions of epilepsy and active epilepsy, and inclusion of febrile fits/single seizures). The prevalence rates for rural and urban populations, as well as male and female ratios with 95% confidence intervals were calculated. The studies, which provided details on the age structure, age-specific rates, and patterns of epilepsy, were chosen for meta-analysis. The crude and age-standardized prevalence rates after accounting for heterogeneity, as well as pooled estimates of standardized prevalence, were calculated. Theχ2 test was used for homogeneity testing. Heterogeneity correction was done by using a simple random-effects model.Results:We identified 21 studies conducted over the last 38 years (10 on urban and 14 on rural populations covering 11 states and two union territories) involving a population sample of 837,039, among whom 4,220 had epilepsy, giving a crude prevalence of 5.04/1,000. The nonstandardized crude prevalence per thousand (95% confidence interval) after correction for heterogeneity was 5.44 (3.79–7.09). Age-standardized rates (seven studies from seven states involving a population sample of 448,109), after correction for the variability in estimates of heterogeneity, revealed that the prevalence rate per 1,000 (95% confidence interval) was overall, 5.39 (3.78–7.01); males, 5.76 (4.23–7.28); females, 4.68 (2.94–6.42); urban, 6.02 (3.98–8.05); and rural, 4.77 (2.36–7.18). Although urban male and female subjects had higher prevalence compared with rural male and female subjects, the difference was not statistically significant. Age-specific prevalence rates were higher in the younger age group. The onset of epilepsy was mostly in the first three decades. The treatment gap was>70% in the rural areas. Generalized seizures constituted 45.45–86%, and partial seizures, 11.45–54.54%; 5.2–24.4% had a family history of epilepsy. The frequency of mental retardation ranged from 4.4 to 22.9%.Conclusions:The heterogeneity found among the various studies may be partly due to methodologic differences referred to earlier. The heterogeneity also may be due to prevalence of local types of epilepsy (hot-water epilepsy); differences in prevalence of cysticercosis, malaria, Japanese encephalitis, and head injuries; or due to denial of epilepsy on account of social stigma. The prevalence rates (crude and age-standardized) found in this meta-analysis are comparable to those in the Western countries and China. The estimated number of persons with epilepsy in India as per the census population for 2001 (1,025 million) would be 5.5 million. Because the rural population constitutes 72% of the Indian population, the number of persons with epilepsy in rural areas will be∼3.6 million, among whom three fourths will not be receiving any specific treatment as per the present standards. The model used in this study is useful for estimating disease burden in large countries. Epilepsy in an Indigenous Population: Experiences of Epilepsy Reported by New Zealand Maori.Purpose:To explore New Zealand Maori (14% of population) understanding of the causes, nature, effects, and treatment of epilepsy. Maori are highly westernized, owning their own homes, with 83% urban, and of all socioeconomic status (SES) levels. Their collectivist society has been remarkably revitalized since 1970, with 3% of schools teaching in Maori, 17% of children studying Maori, and 20% of Maori-fluent speakers. A life expectancy of 69 years and median age of 22 years (cf. 78 and 37 for non-Maori) suggest a higher epilepsy prevalence. Their health concept includes self, spiritual, family, and environmental aspects, with epilepsy traditionally seen as demonic possession resulting from breaking of sacred laws. New Zealand epilepsy treatment is by general practitioner after referral to a neurologist; no epilepsy centers or specialists exist. Drugs are heavily subsidized. Information and support is provided by Epilepsy New Zealand Field Officers, who report disproportionately few Maori clients, whereas hospitals report excessive Maori hospitalizations for seizures. Hills and Simonsen (1999: Epilepsy in an Indigenous Community. Poster paper at the Annual Conference of the American Epilepsy Society, Orlando, FL, U.S.A.) found some belief in supernatural causes, that epilepsy reduced personal and family status, poor compliance, alternative medicine use, and poor access to informed support.Methods:A Maori interviewer (L.E.M.) administered a structured interview in their own homes to 16 adult Maori with either tonic–clonic or complex partial epilepsy and thematically analyzed responses.Results:Perceived causes of epilepsy included heredity, injury, puberty, spiritual experience, and medical misadventure. Supernatural causes cited included a devil inside, a curse, being God-given, and stigma carried from ancestral sacred law breaking. Many were ignorant of seizure type. Most families reacted with acceptance and support, explanation in terms of spiritual beliefs, some victim-blaming, and little desire to know more. Reported were childhood teasing, shame and feeling outcast, with adults feeling unloved and restricted and wanting to know more. Coping strategies included calm acceptance, music, art, education, weather-watching, prayer, and herbal alternative medication. Collectivist Maori society emphasizes familial world-view and decision-making influence. Familial shame about epilepsy triggers sheltering and secrecy. However, the extended family, assisted by friends, social workers, and Maori Health Provider organizations provides psychological support, assisting with medication compliance and societal reactions. Treatment must involve the family and may include externally applied herbal medicine, head-to-toe massage, and developing a positive attitude by using art, music, etc. Maori regarded epilepsy with tolerance, humor, and little desire to know more, although friends might fear epilepsy as insanity. Costs described included deteriorating friendships and marital relations. Important socialization difficulties included not being able to drive a car or drink alcohol, and acquaintance avoidance. The financial costs of medication, doctors' fees, and travel to a clinic for small-town dwellers and nondrivers were cited, as were employment and education difficulties. Doctors were described as providing little information or discussion, using incomprehensible jargon, and being ignorant of cultural specifics. Participants wanted Maori-oriented health workers and field officers to advocate with medical experts and provide culturally sensitive information and support, information on state financial support, contact with other Maori with epilepsy, and education of their extended family about epilepsy. Alternative treatments should be recognized as effective and in harmony with the body, nature, and the spiritual world.Conclusions:Maori people with epilepsy demonstrated ignorance of medical explanations of the cause, nature, and treatment of epilepsy; belief in supernatural and ancestral causes; and emphasis on the family role, acceptance and resignation, a need for culturally sensitive treatment, advice and support, and a holistic approach to health.Acknowledgment:New Zealand Health Research Council, Waikato University Maori and Psychology Research Unit and Psychology Department, participants and their families. A Demonstration Project of the Global Campaign Against Epilepsy in the People's Republic of China.Purpose:A Global Campaign Against Epilepsy project has begun in the People's Republic of China among a population of∼2.5 million. The project included three parts: (a) epidemiologic survey to estimate the prevalence of active epilepsy and the treatment gap in seven counties of five provinces in China; (b) treatment of convulsive forms of epilepsy at a primary care level; and (c) education, social, and community interventions to reduce stigmatization of people with epilepsy. The main results of epidemiologic survey are reported here.Methods:A door-to-door epidemiologic survey was carried out in demonstration areas. The total number of people who could have been included in this survey was 58,806. The screening questionnaires were based on the World Health Organization (WHO) screening questionnaires previously used in China and on the ICBERG screening instrument and were validated at the Beijing Neurosurgical Institute for specificity (78.5%) and sensitivity (100%). Participating physicians and health workers were trained to use the questionnaire and to use a standardized technique so that the same questions could be asked in the same manner. After physicians had completed the questionnaire, any question that elicited a positive response led to a neurologist visiting that person to determine whether he or she actually had epilepsy.Results:The 55,616 (94.6%) people were interviewed in the five study areas. In total, 869 (1.6%) persons screened positive and identified as possible cases. After the review process by neurologists, however, only 387 (0.7%) persons were confirmed as having a definitive history of epilepsy. This gives a minimum lifetime prevalence rate of 7/1,000. The number of people with active epilepsy in the last year was 257, an active epilepsy prevalence of 4.6/1,000. It is estimated that nearly 9 million people have epilepsy and∼6 million people have active epilepsy in China. Of the 387 people identified with epilepsy, 157 (41%) were found not to have received any treatment; 35% had received irregular treatment, and only 96 (25%) had received antiepileptic drug treatment in the week before the survey; 257 patients had active epilepsy, 161 (63%) of whom did not receive any treatment in the week before the survey.Conclusions:This study is important for several reasons. It has provided baseline data for the demonstration project. Not only does this mean that the project's future effectiveness can be measured, but it also should lead to a better targeting of resources within the project. At a national level, the data provide further weight to the argument that epilepsy should have a higher priority in the PRC. Both the higher numbers of people with epilepsy and the higher percentage of untreated epilepsy should encourage policy makers to push epilepsy higher up the health agenda and confirm the Global Campaign's message that epilepsy must be“brought out of the shadows.” [ABSTRACT FROM AUTHOR]