Summary: Purpose:The worldwide prevalence of epilepsy is variable, estimated at 10//1,000 people, and access to treatment is also variable. Many people go untreated, particularly in resourcepoor countries.Objective: To estimate the prevalence of epilepsy and the proportion of people not receiving adequate treatment in different socioeconomic classes in Brazil, a resource-poor country.Methods: A door-to-door survey was conducted to assess the prevalence and treatment gap of epilepsy in three areas of two towns in Southeast Brazil with a total population of 96,300 people. A validated screening questionnaire for epilepsy (sensitivity 95.8%, specificity 97.8%) was used. A neurologist further ascertained positive cases. A validated instrument for socioeconomic classification was used.Results: Lifetime prevalence was 9.2/1,000 people [95% CI 8.4-10.0] and the prevalence of active epilepsy was 5.4/1,000 people. This was higher in the more deprived social classes (7.5/1,000 compared with 1.6/1,000 in the less deprived). Prevalence was also higher in elderly people (8.5/1,000). Thirty-eight percent of patients with active epilepsy had inadequate treatment (19% on no medication); the figures were similar in the different socioeconomic groups.Conclusion: The prevalence of epilepsy in Brazil is similar to other resource-poor countries, and the treatment gap is high. Epilepsy is more prevalent among less wealthy people and in elderly people. There is an urgent need for education in Brazil to inform people that epilepsy is a treatable, as well as preventable, condition.

-Purpose: To validate a Stigma Scale of Epilepsy (SSE). Methods: The SSE was completed by 40 adult with epilepsy attending an Outpatient Epilepsy Clinic at the University Hospital of UNICAMP, and by 40 people from the community. People were interviewed on an individual basis; a psychologist read the questions to the subjects who wrote the answers in a sheet. The procedure was the same for all the subjects and completion took around ten minutes. Results: The SSE has 24 items. The internal consistency of the SSE showed C ro n b a c h 's coefficient 0.88 for the patients with epilepsy and 0.81 for the community. The overall mean scores of the Stigma Scale of Epilepsy formula were: 46 (SD=18.22) for patients and 49 (SD=13.25) for the community where a score of 0 would suggest no stigma, and 100 maximum stigma. Discussion: The SSE has satisfactory content validity and high internal consistency. It allows the quantification of the perception of stigma by patients and people from community; this can then be used for interventional studies, such as mass media campaign in minimizing the negative facets of stigma.KEY WORDS: stigma, epilepsy, instrument development, quality of life, validation, stigma scale. Escala de estigma na epilepsia: processo de validação RESUMO -Objetivo: Validar a Escala de Estigma na Epilepsia (EEE). Método: A EEE foi aplicada em 40 pacientes adultos com o diagnóstico de Epilepsia do Ambulatório de Epilepsia do HC/Unicamp e em 40pessoas da comunidade em geral. Os sujeitos foram entrevistados individualmente pelas psicólogas, que foram lendo as questões e anotando as respostas na escala. As condições de aplicação foram as mesmas e a aplicação durou cerca de 10 minutos. Resultados: A EEE possui 24 itens. A consistência interna da EEE mostrou de Cronbach, de 0,88 para os pacientes com epilepsia e 0,81 para a comunidade. As médias do valor geral de estigma obtido com a fórmula da EEE foram: 46 (DP=18,22) para os pacientes e 49 (DP=13,25) para a comunidade. Discussão: A EEE possui uma satisfatória validade e alta consistência interna. Isso permite uma quantificação da percepção de estigma da epilepsia na comunidade em geral, que pode ser utilizada para estudos interventivos, como campanhas na mídia, para minimizar as facetas negativas do estigma na sociedade.PA L AV R A S -C H AVE: estigma, epilepsia, criação de instrumento, qualidade de vida, validação, escala de estigma.

-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 diff e rent 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 -f ree. They estimated that 55% of patients were on monotherapy and that 59% had been re f e rred 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 re q u i re d for epilepsy management. To make this effective and efficient re q u i res: i) an established re f e rral 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 pro f e s s i o n a l s . The educational program should be broad spectrum and include not only medical management, but also psycho-social aspects of epilepsy.KEY WORDS: epilepsy, anti-epileptic drug, primary care, seizure.Projeto demonstrativo em epilepsia no Brasil: avaliação situacional RESUMO -Objetivo: Avaliar a situação da assistência à epilepsia no contexto da atenção primária sob o P rojeto Demonstrativo em epilepsia no Brasil, parte da Campanha Global Epilepsia Fora das Sombras da W H O / I L A E / I B E . 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 d i f e rentes regiões do Brasil sobre epilepsia e seu manejo na rede básica de saúde. Resultados: A pre v a l ê ncia acumulada de epilepsia foi de 9,2/1000 pessoas (95%IC= 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% que estavam sem medica...

-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 fre q u e n c y, 2) subjective perception from the patient's and the physic i a n 's 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 f rom 0 (no seizure in the previous 24 months) to 7 (>10 seizure/day). The baseline median seizure -f re q u e ncy score was 3 (one to three seizures per month). At the end of the study the median seizure -f re q u e n c y 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 measu res centred on the health care providers and the community, has proved to be effective providing important reductions in seizure fre q u e n c y, 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 forw a rd in accord a n c e with local health providers and managers.KEY WORDS: epilepsy, anti-epileptic drug, seizure, primary care.Projeto demonstrativo em epilepsia no Brasil: avaliação do desfecho RESUMO -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 quat ro 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%), 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 cr...

Summary:Purpose: Clobazam (CLB) has an important antiepileptic effect and is less expensive than the new antiepileptic drugs (AEDs), but still has not been considered as first-line drug in the treatment of epilepsy. We evaluated the efficacy of CLB as add-on therapy in patients with refractory partial epilepsy.Methods: This was an open, retrospective study, conducted at the epilepsy clinic of our university hospital. All patients had chronic epilepsy and were being evaluated for epilepsy surgery. CLB was introduced as add-on therapy (starting with 10 mg/ day) in patients with previous failure of at least two AEDs. Information was obtained from clinical notes and follow-up visits.Results: We evaluated 97 patients, 37 men and 60 women. Ages ranged from 15 to 70 years (mean, 35.8 years). Etiology of epilepsy was hippocampal atrophy in 67 (69%), cortical dysgenesis in nine (9.3%), and other etiologies in nine (9.3%). In 12 (12.3%) patients, the etiology of epilepsy was not identified despite clinical and neurologic investigation. Patients used CLB for a period ranging from 1 month to 7 years and 9 months (mean, 16.7 months) with doses ranging from 10 to 60 mg/day (mean, 29.7 mg/day). Seven (7.2%) patients were seizure free, 48 (49.4%) had Ն50% of improvement in seizure control, 39 (40.2%) had <50% of improvement in seizure control, and in three (3.1%), no data were available.Conclusions: We conclude that CLB may have efficacy equivalent to that of the new AEDs when used as add-on therapy in patients with refractory epilepsy. CLB should be considered an economic alternative in the treatment of patients with refractory epilepsy.