ILAE/IBE/WHO Global Campaign Against Epilepsy: a partnership that works.

PURPOSE OF REVIEW: Epilepsy can hijack the lives of many persons of all ages. It is an unpredictable disease that can manifest itself in seizures, brain damage and cognitive and psychiatric disabilities, although some people with epilepsy can have a relatively normal life. People with epilepsy are among the most vulnerable in any society because the disease is misunderstood and often stigmatizing. Thus, many patients and their families are reluctant to admit that they suffer from epilepsy. This in turn affects public policy in terms of patient care, early diagnosis, medical research, advocacy, cure and their very lives. RECENT FINDINGS: A survey to evaluate the results of Global Campaign Against Epilepsy activities on a national level was performed in 2009. Data from the demonstration projects have already changed the public policies in several countries. SUMMARY: On the occasion of the launch of phase II of the Campaign, the WHO Director General stated: 'The collaboration between the IBE, ILAE and WHO has shown that when people with different backgrounds and roles come together with a shared purpose, creativity is released and expertise is used in innovative and constructive ways'. Indeed, this partnership led to many activities and all over the world to many people 'standing up for epilepsy'.

Knowledge, attitudes, and stigma towards epilepsy in different walks of life: a study in Georgia.

We conducted a survey to assess public awareness of epilepsy and stigma expression in different social groups in Tbilisi, Georgia. Respondents were divided into those from a medical or paramedical background, those with a nonmedical professional background, and a group with unskilled workers or unemployed individuals. One thousand and sixteen people completed a Knowledge, Attitude and Perception questionnaire. Medical and paramedical professionals had a better general knowledge about epilepsy, its possible causes, and its nature, but their views on treatment and attitudes towards epilepsy were the same or worse when compared to the other groups. Of the respondent, 14% would not let their children play with people with epilepsy, and 75% would not allow their children to marry a person with epilepsy. Nearly a third of teachers considered epilepsy a psychiatric disorder. This suggests a high degree of stigma towards epilepsy in Georgia. Increasing awareness is crucial to ameliorate this.

Long-term outcome of phenobarbital treatment for epilepsy in rural China: a prospective cohort study.

PURPOSE: To evaluate the long-term outcome of phenobarbital treatment for convulsive epilepsy in rural China, and to explore factors associated with overall seizure outcomes. METHODS: We carried out follow-up assessments of people who took part in an epilepsy community management program conducted in rural counties of six provinces in China. People with convulsive epilepsy who were previously untreated (or on irregular treatment) were commenced on regular treatment with phenobarbital. Information was collected using a standardized questionnaire by face-to-face interviews of the individuals (and their families where necessary). Information collected included treatment status, medication change, seizure frequency, and mortality. KEY FINDINGS: Among the 2,455 people who participated in the original program, outcomes were successfully ascertained during the follow-up assessment in 1986. Among them, 206 had died. Information on treatment response was obtained in 1,780 (56% male; mean age 33.9 years, range 3-84; mean duration of follow-up 6.4 years). Among them, 939 (53%) were still taking phenobarbital. The most common reasons for stopping phenobarbital were seizure freedom or substantial seizure reduction, socioeconomic reasons, and personal preference. Four hundred fifty-three individuals (25%) became seizure-free for at least 1 year while taking phenobarbital, 88% of whom did so at daily doses of 120 mg or below. Four hundred six (23%) reported adverse events, which led to withdrawal of phenobarbital in <1%. The most common adverse effects were malaise/somnolence (7.4%), dizziness (3%), and lethargy (2.6%). At the follow-up assessment, 688 (39%) individuals had been seizure free for at least the previous year. People with persistent seizures had significantly longer duration of epilepsy and higher number of seizures in the 12 months before treatment. People who were taking AED treatment irregularly at recruitment were less likely to become seizure-free. SIGNIFICANCE: We observed long-term benefits of regular treatment with phenobarbital for convulsive epilepsy in rural China. One hundred years after the discovery of its antiepileptic effect, phenobarbital is still playing an important role in the management of epilepsy.

Premature mortality risk in people with convulsive epilepsy: long follow-up of a cohort in rural China.

PURPOSE: Detailed data on the mortality of epilepsy are still lacking from resource-poor settings. We conducted a long-term follow-up survey in a cohort of people with convulsive epilepsy in rural areas of China. In this longitudinal prospective study we investigated the causes of death and premature mortality risk among people with epilepsy. METHODS: We attempted to trace all 2,455 people who had previously participated in a pragmatic assessment of epilepsy management at the primary health level. Putative causes of death were recorded for those who died, according to the International Classification of Diseases. We estimated proportional mortality ratios (PMRs) for each cause, and standardized mortality ratios (SMRs) for each age-group and cause. Survival analysis was used to detect risk factors associated with increased mortality. KEY FINDINGS: During 6.1 years of follow-up there were 206 reported deaths among the 1,986 people with epilepsy who were located. The highest PMRs were for cerebrovascular disease (15%), drowning (14%), self-inflicted injury (13%), and status epilepticus (6%), with probable sudden unexpected death in epilepsy (SUDEP) in 1%. The risk of premature death was 2.9 times greater in people with epilepsy than in the general population. A much higher risk (SMRs 28-37) was found in young people. Duration of epilepsy and living in a waterside area were independent predictors for drowning. SIGNIFICANCE: Drowning and status epilepticus were important, possibly preventable, causes of death. Predictors of increasing mortality suggest interventions with efficient treatment and education to prevent premature mortality among people with epilepsy in resource-poor settings.

Cognitive and mood effects of phenobarbital treatment in people with epilepsy in rural China: a prospective study.

BACKGROUND: Phenobarbital is an effective treatment for epilepsy but concerns remain over its potential neurocognitive toxicity. This prospective study evaluated the effects of phenobarbital treatment on cognition and mood in people with epilepsy in rural China. METHODS: We recruited 144 adults with convulsive seizures and 144 healthy controls from six sites in rural China. People with epilepsy were treated with phenobarbital monotherapy for 12 months. At baseline, and at 3, 6 and 12 months, cases and controls were evaluated with a battery of neuropsychological tests: the Mini-Mental State Examination, the Hamilton Depression Rating Scale, a digit span test, a verbal fluency test, an auditory verbal learning test and a digit cancellation test. Efficacy of phenobarbital treatment was evaluated at the end of follow-up for those with epilepsy. RESULTS: Cognitive test scores and mood ratings were available for 136 (94%) people with epilepsy and 137 (95%) controls at the 12 month follow-up. Both groups showed slightly improved performance on a number of neuropsychological measures. The people with epilepsy showed greater performance gains (p=0.012) in verbal fluency. Nine people with epilepsy complained of memory problems during the treatment period. CONCLUSION: In this study, phenobarbital was not found to have a major negative impact on cognitive function of people with convulsive seizures and some cognitive gains were observed, possibly due to improved seizure control.

The prevalence and treatment gap of epilepsy in Tbilisi, Georgia.

INTRODUCTION: Data on the prevalence of epilepsy and the extent of its treatment gap are important for planning health care delivery for people with epilepsy. The prevalence of active epilepsy in Georgia prior to the social and political re-organization in the early 1990s was estimated at around 5.7 per 1000. Changes to the social structure of the country may have affected this. There is no previous estimate of the treatment gap. METHODS: A door-to-door survey was carried out using a validated screening questionnaire to determine the prevalence of epilepsy and the extent of the treatment gap amongst a population of about 10,000 people in Tbilisi, the capital of Georgia. The diagnosis of epilepsy amongst those who screened positive was confirmed by a multidisciplinary team. RESULTS: Lifetime prevalence was 11.4/1000. The prevalence of active epilepsy was estimated at 8.8/1000, and 5/1000 had seizures in the previous 12 months. About two thirds of people with active epilepsy had not received appropriate antiepileptic treatment in the month prior to the survey. 89% had focal epilepsy and two thirds had co-morbidity (neurological deficits, behavioral, psychiatric or somatic problems). CONCLUSION: The prevalence of epilepsy was higher than previously estimated and the treatment gap was substantial. Results should inform the planning of epilepsy care delivery in the country.

Epilepsy stigma: moving from a global problem to global solutions.

Stigma and exclusion are common features of epilepsy in both the developed and developing countries and a major contributor to the burden associated with the condition. Reducing the stigma of epilepsy is key to reducing its impact and so improving quality of life. The social consequences of having epilepsy can be enormous, be it that they vary from country to country, based on cultural differences and economic circumstances. The most significant problems people with epilepsy encounter in daily life often are not related to the severity of the condition, but stem from concepts of epilepsy held by the general public. In this paper, I review the history of epilepsy and consider how different historical and cultural understandings of epilepsy have determined the experience of stigma for those affected by it. I consider how this history of stigma impacts on the position of people with epilepsy today, many of whom may still experience serious limitations to their enjoyment of economic, social and cultural rights and have many unmet needs in the areas of civil rights, education, employment, residential and community services, and access to appropriate health care. Finally, I will discuss some current initiatives aimed at addressed the issue of epilepsy stigma worldwide, which offer hope of an end to the social exclusion and prejudice which people with epilepsy have endured for so long.

Changes in knowledge, attitude, and practice of people with epilepsy and their families after an intervention in rural China.

To evaluate the effectiveness of a combined intervention on knowledge, attitude, and practice (KAP) of people with epilepsy and their families in rural areas of China, random samples of people with epilepsy and their family members from the intervention populations completed questionnaires prior to the intervention (2002, N=975) and 2 years later (N=950). There was no significant difference in important demographic variables between the two samples. KAP levels of patients and their family members improved over the study period. Worry about seizures, discrimination, and medical costs are the principal factors in patients' psychological burden. Psychological burden and inability to concentrate at work are the main influences of the disease on family members. Reduction of the psychological burden of patients and their family members is a significant aspect of treatment to which more attention should be paid in similar future interventions.

The global burden and stigma of epilepsy.

Epilepsy is one of the most prevalent neurological conditions and it knows no age, racial, social class, geographic, or national boundaries. The impact of epilepsy rests not only on the individual patient, but also on the family and indirectly on the community. The burden of epilepsy may be due to the physical hazards of epilepsy resulting from the unpredictability of seizures; the social exclusion as a result of negative attitudes of others toward people with epilepsy; and the stigma, as children with epilepsy may be banned from school, adults may be barred from marriage, and employment is often denied, even when seizures would not render the work unsuitable or unsafe. Furthermore, epilepsy is a disorder associated with significant psychological consequences, with increased levels of anxiety, depression, and poor self-esteem compared with people without this condition. Here we discuss some of the aspects of the global burden of epilepsy.

Global campaign against epilepsy: assessment of a demonstration project in rural China.

OBJECTIVE: The Global Campaign Against Epilepsy demonstration project in rural China aimed: to reduce the treatment gap and morbidity of people with epilepsy by using community-level interventions; to train and educate health professionals; to dispel stigma; to identify potential for prevention and to develop models of integration of epilepsy control into the local health systems. We report the overall results of the demonstration project, focusing on the prevalence and the change in the treatment gap of epilepsy after an intervention. METHODS: Door-to-door epidemiological surveys were carried out before, and 6 months after the end of, an intervention project for epilepsy in rural settings in five provinces of China. The intervention consisted of a treatment programme available to patients without prior appropriate treatment and a public health educational programme about epilepsy. The sampled population in the second survey was 51 644 people. FINDINGS: In the second survey, epilepsy was confirmed in 320 people, yielding a lifetime prevalence of 6.2/1000 and a prevalence of active epilepsy of 4.5/1000. The lifetime prevalence and prevalence of active epilepsy in the first survey were 7.0/1000 and 4.6/1000, respectively. The treatment gap of active epilepsy in the second survey was 49.8%, 12.8 percentage points lower than that of the first survey (62.6%). CONCLUSION: The results of this study suggest that the intervention measures used were possibly effective and evidently feasible in rural China, contributing to a decrease in the treatment gap of epilepsy.

Epilepsy stigma perception in an urban area of a limited-resource country.

OBJECTIVE: To estimate the perception of stigma attached to epilepsy in an urban society of a limited-resource country, Brazil. METHODS: We applied a validated Stigma Scale of Epilepsy (SSE) cross-sectionally to 1850 people from all regions within the metropolitan area of Campinas, following a sampling selection methodology (95% confidence interval and error of 2.3). RESULTS: The overall score for epilepsy stigma perception was 42 (range, 3-98; SD, 14). The SSE score for women was higher (43) than that for men (40). With respect to religion, Spiritism had the lowest SSE score (35) compared with Catholic, Evangelical, other, and no religion. Level of education was inversely related to SSE scores; illiterate people had higher SSE scores (45) than people with higher education (37). CONCLUSION: This is one of the first systematic assessments of epilepsy stigma perception in an urban area of a limited-resource country. It was found that the magnitude of stigma is different within segments of the local society, highlighting that sociocultural factors such as gender, religion, and level of education may be important predictors of stigma.

Demonstration Project on Epilepsy in Brazil: situation assessment.

PURPOSE: To provide a situation assessment of services for people with epilepsy in the context of primary health care, as part of the Demonstration Project on Epilepsy in Brazil, part of the WHO/ILAE/IBE Global Campaign 'Epilepsy out of the shadows'. METHODS: We performed a door-to-door epidemiological survey in three areas to assess the prevalence of epilepsy and its treatment gap. We surveyed a sample of 598 primary health care workers from different regions of Brazil to assess their perceptions of the management of people with epilepsy in the primary care setting. RESULTS: The lifetime prevalence of epilepsy was 9.2/1,000 people [95% CI 8.4-10.0] and the estimated prevalence of active epilepsy was 5.4/1,000 people. Thirty-eight percent of patients with active epilepsy were on inadequate treatment, including 19% who were taking no medication. The survey of health workers showed that they estimated that 60% of patients under their care were seizure-free. They estimated that 55% of patients were on monotherapy and that 59% had been referred to neurologists. The estimated mean percentage of patients who were working or studying was 56%. Most of the physicians (73%) did not feel confident in managing people with epilepsy. DISCUSSION: The epidemiological survey in the areas of the Demonstration Project showed that the prevalence of epilepsy is similar to that in other resource-poor countries, and that the treatment gap is high. One factor contributing to the treatment gap is inadequacy of health care delivery. The situation could readily be improved in Brazil, as the primary health care system has the key elements required for epilepsy management. To make this effective and efficient requires: i) an established referral network, ii) continuous provision of AEDs, iii) close monitoring of epilepsy management via the notification system (Sistema de Informação da Atenção Básica - SIAB) and iv) continuous education of health professionals. The educational program should be broad spectrum and include not only medical management, but also psycho-social aspects of epilepsy.

Teachers perception about epilepsy.

PURPOSE: To identify in a town of Brazil the knowledge, attitude and perception of epilepsy in teachers of elementary schools and to compare these before and after a training exercise. METHODS: Teachers of nine public schools of Barão Geraldo, Campinas, Brazil completed a questionnaire. Two researchers had meetings with teachers, presenting the Global Campaign "Epilepsy out of the shadows", when the questionnaire was first completed by all attendees. Twenty teachers of these schools were motivated to attend a training course entitled "Epilepsy and Health" as part of their continuous education programme. Two years later the same questionnaire was again completed (post-test) by these 20 teachers. RESULTS: 100 teachers originally completed the questionnaire (97 women, mean age 42 years, 64 married). Forty-three percent of teachers said that they had enough knowledge regarding epilepsy and 20% said that they had poor knowledge about the condition. Regarding the IQ of children with epilepsy, 45% of teachers believed that they had average IQ, 18% above average, six percent under average and 29% did not know. Teachers believed that children with epilepsy have a higher possibility of acquiring mental disease in the future (51%); that epilepsy is a disease (68%); that epilepsy is contagious (1%); epilepsy is treatable (90%). After the course, the teachers beliefs seem to have improved. DISCUSSION: This work with elementary school teachers identified difficulties related to epilepsy which, if addressed, may help promote better quality of life of people with epilepsy in the community and help to decrease stigma attached to the condition. Better informed teachers are likely to have a more positive attitude and this will be passed to others. Educational campaigns about epilepsy amongst teachers should be encouraged as this may improve the management of epilepsy, by helping to develop a well informed and tolerant community.

Demonstration project on epilepsy in Brazil: outcome assessment.

PURPOSE: To assess the outcome of patients with epilepsy treated at primary care health units under the framework of the demonstration project on epilepsy in Brazil, part of the WHO/ILAE/IBE Global Campaign Against Epilepsy. METHOD: We assessed the outcome of patients treated at four primary health units. The staff of the health units underwent information training in epilepsy. The outcome assessment was based on: 1) reduction of seizure frequency, 2) subjective perception from the patients and the physicians point of view, 3) reduction of absenteeism, 4) social integration (school and work), and 5) sense of independence. RESULTS: A total of 181 patients (93 women - 51%) with a mean age of 38 (range from 2 to 86) years were studied. The mean follow-up was 26 months (range from 1 to 38 months, 11 patients had follow-up of less than 12 months). Seizure frequency was assessed based on a score system, ranging from 0 (no seizure in the previous 24 months) to 7 (>10 seizure/day). The baseline median seizure-frequency score was 3 (one to three seizures per month). At the end of the study the median seizure-frequency score was 1 (one to three seizures per year). The patients and relatives opinions were that in the majority (59%) the health status had improved a lot, some (19%) had improved a little, 20% experienced no change and in 2% the health status was worse. With regard to absenteeism, social integration and sense of independence, there were some modest improvements only. DISCUSSION: The development of a model of epilepsy treatment at primary health level based on the existing health system, with strategic measures centred on the health care providers and the community, has proved to be effective providing important reductions in seizure frequency, as well as in general well being. This model can be applied nationwide, as the key elements already exist provided that strategic measures are put forward in accordance with local health providers and managers.

Demonstration project on epilepsy in Brazil: situation assessment

PURPOSE: To provide a situation assessment of services for people with epilepsy in the context of primary health care, as part of the Demonstration Project on Epilepsy in Brazil, part of the WHO/ILAE/IBE Global Campaign 'Epilepsy out of the shadows'. METHODS: We performed a door-to-door epidemiological survey in three areas to assess the prevalence of epilepsy and its treatment gap. We surveyed a sample of 598 primary health care workers from different regions of Brazil to assess their perceptions of the management of people with epilepsy in the primary care setting. RESULTS: The lifetime prevalence of epilepsy was 9.2/1,000 people [95 percent CI 8.4-10.0] and the estimated prevalence of active epilepsy was 5.4/1,000 people. Thirty-eight percent of patients with active epilepsy were on inadequate treatment, including 19 percent who were taking no medication. The survey of health workers showed that they estimated that 60 percent of patients under their care were seizure-free. They estimated that 55 percent of patients were on monotherapy and that 59 percent had been referred to neurologists. The estimated mean percentage of patients who were working or studying was 56 percent. Most of the physicians (73 percent) did not feel confident in managing people with epilepsy. DISCUSSION: The epidemiological survey in the areas of the Demonstration Project showed that the prevalence of epilepsy is similar to that in other resource-poor countries, and that the treatment gap is high. One factor contributing to the treatment gap is inadequacy of health care delivery. The situation could readily be improved in Brazil, as the primary health care system has the key elements required for epilepsy management. To make this effective and efficient requires: i) an established referral network, ii) continuous provision of AEDs, iii) close monitoring of epilepsy management via the notification system (Sistema de Informação da Atenção Básica - SIAB) and iv)...

OBJETIVO: Avaliar a situação da assistência à epilepsia no contexto da atenção primária sob o Projeto Demonstrativo em epilepsia no Brasil, parte da Campanha Global Epilepsia Fora das Sombras da WHO/ILAE/IBE. MÉTODO: Fizemos um levantamento epidemiológico para definir a prevalência e lacuna de tratamento em epilepsia. Avaliamos a percepção de 598 profissionais de saúde da atenção básica de diferentes regiões do Brasil sobre epilepsia e seu manejo na rede básica de saúde. RESULTADOS: A prevalência acumulada de epilepsia foi de 9,2/1000 pessoas (95 por centoIC= 8,4-10) e a prevalência estimada de epilepsia ativa foi de 5,4/1000 pessoas. Trinta e oito porcento dos pacientes com epilepsia ativa estavam sendo tratados inadequadamente, incluindo 19 por cento que estavam sem medicação. A enquete com os profissionais de saúde mostrou que a média estimada de pacientes livre de crises sob os cuidados dos mesmos era de 60 por cento. A média estimada de porcentagem em monoterapia era de 55 por cento. A média estimada de porcentagem de referência para neurologistas era de 59 por cento. A média estimada de porcentagem de pacientes que estavam trabalhando ou estudando era de 56 por cento. A maioria dos médicos não se sente confiante em atender uma pessoa com epilepsia. DISCUSSÃO: A análise situacional da Fase I - estudo epidemiológico nas áreas de interesse do PD mostrou que a prevalência da epilepsia é similar a outros países em desenvolvimento e a lacuna de tratamento é grande. Um dos fatores importantes para a lacuna de tratamento é a falta de adequação à assistência na atenção básica. Essa situação pode ser revertida no Brasil, pois os elementos chaves existem na rede básica para o manejo de pessoas com epilepsia. Entretanto, para torna efetivo e eficiente é preciso i) estabelecimento de um sistema de referência e contra-referência, ii) fornecimento contínuo de medicação anti-epiléptica, iii) monitorização de manejo de pessoas com epilepsia através...

Teachers perception about epilepsy

PURPOSE: To identify in a town of Brazil the knowledge, attitude and perception of epilepsy in teachers of elementary schools and to compare these before and after a training exercise. METHODS: Teachers of nine public schools of Barão Geraldo, Campinas, Brazil completed a questionnaire. Two researchers had meetings with teachers, presenting the Global Campaign "Epilepsy out of the shadows", when the questionnaire was first completed by all attendees. Twenty teachers of these schools were motivated to attend a training course entitled "Epilepsy and Health" as part of their continuous education programme. Two years later the same questionnaire was again completed (post-test) by these 20 teachers. RESULTS: 100 teachers originally completed the questionnaire (97 women, mean age 42 years, 64 married). Forty-three percent of teachers said that they had enough knowledge regarding epilepsy and 20 percent said that they had poor knowledge about the condition. Regarding the IQ of children with epilepsy, 45 percent of teachers believed that they had average IQ, 18 percent above average, six percent under average and 29 percent did not know. Teachers believed that children with epilepsy have a higher possibility of acquiring mental disease in the future (51 percent); that epilepsy is a disease (68 percent); that epilepsy is contagious (1 percent); epilepsy is treatable (90 percent). After the course, the teachersÆ beliefs seem to have improved. DISCUSSION: This work with elementary school teachers identified difficulties related to epilepsy which, if addressed, may help promote better quality of life of people with epilepsy in the community and help to decrease stigma attached to the condition. Better informed teachers are likely to have a more positive attitude and this will be passed to others. Educational campaigns about epilepsy amongst teachers should be encouraged as this may improve the management of epilepsy, by helping to develop a well...

OBJETIVO: Identificar atitudes e percepção dos professores do ensino fundamental a respeito da epilepsia, antes e depois de um curso específico sobre o tema. MÉTODO: Participaram da pesquisa professores de nove escolas da rede pública do ensino fundamental de Barão Geraldo, distrito de Campinas, SP. Dois pesquisadores reuniram-se com os professores e apresentaram a Campanha Global "Epilepsia fora das sombras", momento também em que os questionários foram aplicados. Vinte professores ficaram motivados para fazer o curso de extensão "Temas transversais: epilepsia e saúde". Após este curso, os questionários foram re-aplicados. RESULTADOS: Foram aplicados 100 questionários em professores das nove escolas, sendo que: noventa e sete professores eram do sexo feminino, idade média de 42 (D.P. 22 a 63) e 64 estavam casados. Quarenta e três professores declararam possuir conhecimento sobre epilepsia abaixo da média e 20, disseram possuir um pobre conhecimento sobre a condição. No que diz respeito à idéias sobre epilepsia, os professores acham que: as crianças com epilepsia tem QI igual (45 por cento), na média (18 por cento), abaixo da média (6 por cento) e não sabem opinar (29 por cento); crianças com epilepsia têm maior chance de terem doença mental no futuro (51 por cento); a epilepsia é uma doença (68 por cento); a epilepsia é contagiosa (1 por cento); a epilepsia é tratável (90 por cento). Após o curso, crenças e mitos sobre epilepsia dos professores mostraram diferenças significativas. DISCUSSÃO: Idéias errôneas sobre epilepsia podem ser mudadas através de cursos educacionais sobre epilepsia. Este trabalho, realizado com professores do ensino fundamental, visou a identificação das dificuldades relacionadas à epilepsia para promover a redução do estigma. É importante que professores sejam melhor instruídos sobre a epilepsia para consequentemente, ter atitudes mais positivas em relação às crianças com epilepsia. Acreditamos que professores...

Demonstration project on epilepsy in Brazil: outcome assessment

PURPOSE: To assess the outcome of patients with epilepsy treated at primary care health units under the framework of the demonstration project on epilepsy in Brazil, part of the WHO/ILAE/IBE Global Campaign Against Epilepsy. METHOD: We assessed the outcome of patients treated at four primary health units. The staff of the health units underwent information training in epilepsy. The outcome assessment was based on: 1) reduction of seizure frequency, 2) subjective perception from the patients and the physicians point of view, 3) reduction of absenteeism, 4) social integration (school and work), and 5) sense of independence. RESULTS: A total of 181 patients (93 women - 51 percent) with a mean age of 38 (range from 2 to 86) years were studied. The mean follow-up was 26 months (range from 1 to 38 months, 11 patients had follow-up of less than 12 months). Seizure frequency was assessed based on a score system, ranging from 0 (no seizure in the previous 24 months) to 7 (>10 seizure/day). The baseline median seizure-frequency score was 3 (one to three seizures per month). At the end of the study the median seizure-frequency score was 1 (one to three seizures per year). The patients and relatives opinions were that in the majority (59 percent) the health status had improved a lot, some (19 percent) had improved a little, 20 percent experienced no change and in 2 percent the health status was worse. With regard to absenteeism, social integration and sense of independence, there were some modest improvements only. DISCUSSION: The development of a model of epilepsy treatment at primary health level based on the existing health system, with strategic measures centred on the health care providers and the community, has proved to be effective providing important reductions in seizure frequency, as well as in general well being. This model can be applied nationwide, as the key elements already exist provided that strategic measures are put forward...

OBJETIVO: Avaliar o resultado do tratamento de pacientes com epilepsia na atenção básica sob o modelo proposto pelo Projeto Demonstrativo no Brasil, como parte da Campanha Global Contra a Epilepsia da WHO/ILAE/IBE. MÉTODO: Avaliamos o resultado do tratamento nos pacientes acompanhados em quatro unidades básicas de saúde. As equipes de saúde fizeram um treinamento padrão. O resultado do tratamento foi baseado em cinco aspectos: 1) redução da freqüência das crises, 2) percepção subjetiva dos pacientes e dos médicos, 3) redução de absenteísmo, 4) integração social (escola, trabalho), e 5) senso de independência. RESULTADOS: Um total de 181 pacientes (93 mulheres - 51 por cento), com uma média de 38 anos (variando de 2 a 86 anos) entraram nesta análise. O tempo médio de seguimento foi de 26 meses (variou de 1 a 38 meses, 11 pacientes tinham seguimento menos de 12 meses). A freqüência das crises foi categorizada variando de 0 (sem nenhuma crise nos últimos 24 meses) a 7 (>10 crises/dia). O escore mediano da freqüência de crises no começo era de 3 (uma a três crises por mês). O escore mediano da freqüência de crises no final era de 1 (uma a três crises por ano). A opinião dos pacientes e familiares é que a maioria (106 casos) houve uma melhora importante na saúde, 34 tiveram pouca melhora, 37 não tiveram mudanças e em quatro houve piora. Em relação ao absenteísmo, integração social e senso de independência houve pouca melhora. DISCUSSÃO: O modelo desenvolvido de tratamento de epilepsia na atenção primária com base na estrutura de saúde existente, com estratégias centradas nos profissionais de saúde e na comunidade, provou ser efetivo com redução importante na freqüência das crises bem como na melhora em geral da saúde. Esse modelo pode ser aplicado em âmbito nacional, pois os elementos chaves já existem, desde que essas estratégias sejam pactuadas com os organismos locais de saúde.

Premature mortality in people with epilepsy in rural China: a prospective study.

BACKGROUND: In China, few studies have described annual mortality associated with epilepsy in a general population and these have provided a range of 3.0-7.9 deaths per 100,000 people. We calculated the case fatality rate (CFR), proportional mortality rate (PMR), and standardised mortality ratio (SMR) to assess mortality in people with epilepsy in rural China. METHODS: The target population was people with epilepsy who participated in an assessment of epilepsy management at primary health level in rural China. Neurologists confirmed the diagnosis using strict criteria in all participants who were then treated with phenobarbital. Demographic data and putative cause of death were recorded for each person whose death was reported. PMRs for each cause of death and SMRs were estimated on the basis of the 2004 Chinese population. FINDINGS: Case fatality rate was 1.4% (35 deaths) among 2455 people with epilepsy. The age-adjusted PMRs for injury, stroke, neoplasm, myocardial infarction, and pneumonia were 30%, 30%, 15%, 6%, and 5%, respectively. The SMR was 3.9 (95% CI 3.8-3.9). Patients aged 15-29 years had higher mortality ratios than did those in other age-groups, with SMRs exceeding 23. INTERPRETATION: Risk for premature death is three to four times higher in people with epilepsy than in the general Chinese population. Furthermore, the risk in young people with epilepsy in China is much higher than previously reported. Injury, stroke, myocardial infarction, and pneumonia are among the leading putative causes of death in patients with epilepsy in rural China.