ISSN X VOL 65 SUPLEMENTO 1 JUNHO. Editors Li M. Li Josemir W. Sander Paula T. Fernandes Hanneke M. de Boer Leonid Prilipko SÃO PAULO, BRASIL

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1 ISSN X VOL 65 SUPLEMENTO 1 JUNHO 2007 Editors Li M. Li Josemir W. Sander Paula T. Fernandes Hanneke M. de Boer Leonid Prilipko SÃO PAULO, BRASIL

2 Arq Neuropsiquiatr 2007;65(Supl 1) ACADEMIA BRASILEIRA DE NEUROLOGIA (ABN) filiada a World Federation of Neurology (WFN) DIRETORIA ( ): Sérgio Roberto Haussen, Presidente; Jorge El-Kadum Noujaim, Vice-Presidente; Fernando Otávio Quaresma Cavalcante, Presidente do Congresso Brasileiro de Neurologia 2008; Osvaldo Massaiti Takayanagui, Diretor Científico. SECRETARIA TESOURARIA GERAL ( ): Secretário Geral, Henrique Ballalai Ferraz; Tesoureiro Geral, Maria Fernanda Mendes; 1º Secretário, Gilmar Fernandes Do Prado, 1º Tesoureiro, Mônica Santoro Haddad DELEGAÇÃO À WORLD FEDERATION OF NEUROLOGY ( ): Francisco Eduardo Costa Cardoso, Delegado; Paulo Caramelli, Suplente. SEDE: Rua Capitão Cavalcanti 327, São Paulo SP, Brasil ( Fone / Fax abneuro@terra.com.br A R Q U I V O S D E N E U R O - P S I Q U I A T R I A Editor Executivo Antonio Spina-França Editores Associados José Antonio Livramento Luís dos Ramos Machado Editor Fundador: Dr. Oswaldo Lange JUNTA EDITORIAL Conselho Editorial Acary Souza Bulle Oliveira Alberto Alain Gabbai Carlos Alberto Mantovani Guerreiro José Luiz Dias Gherpelli Osvaldo Massaiti Takayanagui Paulo Caramelli Rubens José Gagliardi Sylvia Regina Mielli Conselho Consultivo Internacional (International Advisory Board) Andrew J Lees (London, UK) Maria José Sá (Porto, Portugal) Gérard Saïd (Paris, France) Pedro L Ponce (Caracas, Venezuela) James F Toole (Winston-Salem, USA) Roberto E P Sica (Buenos Aires, Argentina) Jun Kimura (Kyoto, Japan) Vladimir Hachinscki (London, Canada) Conselho Científico Amauri Batista da Silva (Brasília DF) Aroldo Luiz da Silva Bacellar (Salvador BA) Ehrenfried Othmar Wittig (Curitiba PR) Elza Dias-Tosta (Brasília DF) Gilberto Belisario Campos (Belo Horizonte MG) Gilson Edmar Gonçalves e Silva (Recife PE) José Geraldo Camargo Lima (São Paulo SP) Lineu César Werneck (Curitiba PR) Luís Ataíde (Recife PE) Luiz Alberto Bacheschi (São Paulo SP) Manoel Caetano de Barros (Recife PE) Milberto Scaff (São Paulo SP) Newra Tellechea Rotta (Porto Alegre RS) Paulo Norberto Discher de Sá (Florianópolis SC) Sebastião Eurico de Melo Souza (Goiânia GO) Sérgio Augusto Pereira Novis (Rio de Janeiro RJ) Vicente de Paulo Leitão de Carvalho (Fortaleza CE) Administradora Adriana Spina França Machado Relações Públicas Luciano Spina França Sede Praça Amadeu Amaral 47 / São Paulo SP - Brasil Fax anprev@terra.com.br -

3 Arq Neuropsiquiatr 2007;65(Supl 1) ASSOCIAÇÃO ARQUIVOS DE NEURO-PSIQUIATRIA DR. OSWALDO LANGE PRAÇA AMADEU AMARAL 47 / SÃO PAULO SP - BRASIL FONE FAX anprev@terra.com.br Arquivos de Neuro-Psiquiatria é periódico registrado no Departamento de Imprensa e Propaganda (11795), Departamento Nacional de Propriedade Industrial (97414), 1º Ofício de Títulos e Documentos de São Paulo (1894). Pertencente, editado e publicado pela Associação Arquivos de Neuro-Psiquiatria Dr. Oswaldo Lange, sociedade de fins não lucrativos registrada no 6º Ofício de Registro de Pessoas Jurídicas de São Paulo (12770), inscrita no Ministério da Fazenda (CNPJ / ) e Secretaria de Finanças do Município de São Paulo (CCM ). Jornal Oficial da Academia Brasileira de Neurologia a partir de Publicado trimestralmente nos meses de março, junho, setembro e dezembro com absoluta regularidade desde sua fundação em 1943 pelo Dr. Oswaldo Lange ( ), que a editou até INDEX: Arq Neuropsiquiatr; ISSN X; CODEN ANPIAM. Catalogação / Indexação: NLL (National Lending Library of Sciences and Technology, Boston UK, 1947), World Medical Periodicals (WHO/UNESCO, 1949), EMBASE / Excerpta Medica (Amsterdam,1960), Ulrichs International Periodicals Directory (ISSN, 1966), Current List of Medical Literature / Index Medicus / Medline (National Library of Medicine, Bethesda USA, 1966), Current Contents (ISI, Institute for Scientific Information, Philadelphia USA, 1969), Periodica (México, 1979), LILACS (BIREME, São Paulo, 1982), IBICT (Brasília, 1988), CCC (Copyright Clearing Center, Danvers USA, 1991), Neuroscience Citation Index (ISI,1993), Biological Abstracts (BIO-ISI, 1993), ISSN (on-line): (IBICT, 2003). Interditada a reprodução de seus artigos e ilustrações, a não ser quando autorizada pela Junta Editorial. Neste caso, devem ser acompanhadas da indicação da origem. Proibida a reprodução de seus artigos, no todo ou em parte, com finalidade comercial. Controle de cópias: CCC, Copyright Clearing Center ( Para outros informes, dirigir-se a Marília Lange Spina França ( ). Arquivos de Neuro-Psiquiatria / Academia Brasileira de Neurologia, Associação Arquivos de Neuro-Psiquiatria Dr. Oswaldo Lange. v. 1, n. 1 (1943) -. - São Paulo: Associação Arquivos de Neuro-Psiquiatria Dr. Oswaldo Lange, v. : il.; 28 cm. Trimestral. Texto em português e inglês. Descrição baseada em: v. 65, supl 1 (2007). ISSN X 1. Neurologia 2. Psiquiatria. 3. Publicações seriadas. 4. Publicações periódicas [Tipo de publicação]. I. Academia Brasileira de Neurologia. II. Associação Arquivos de Neuro-Psiquiatria Dr. Oswaldo Lange. Composto e impresso na Área Visual Comunicação Gráfica Av. Lacerda Franco, São Paulo SP - Brasil Fone/Fax: (11) areavisual@areavisua.com.br Publicidade EPM - Editora de Projetos Médicos Rua Leandro Dupret, Cj São Paulo SP - Brasil Fone/Fax: (11) / epm@plugnet.com.br

4 Arq Neuropsiquiatr 2007;65(Supl 1) Editors Li M. Li Josemir W. Sander Paula T. Fernandes Hanneke M. de Boer Leonid Prilipko

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6 Arq Neuropsiquiatr 2007;65(Supl 1) ARQUIVOS DE NEURO-PSIQUIATRIA VOL. 65 SUPL 1 - JUNHO 2007 Demonstration Project on Epilepsy in Brazil WHO/ILAE/IBE Global Campaign Against Epilepsy: a foreword Projeto Demonstrativo em Epilepsia no Brasil Campanha Global contra Epilepsia da WHO/ILAE/IBE: preâmbulo Li M. Li, Paula T. Fernandes, Hanneke M. de Boer, Leonid Prilipko, Josemir W. Sander...1 Demonstration project on epilepsy in Brazil: situation assessment Projeto demonstrativo em epilepsia no Brasil: avaliação situacional Li M. Li, Paula T. Fernandes, Ana L.A. Noronha, Lucia H.N. Marques, Moacir A. Borges, Fernando Cendes, Carlos A.M. Guerreiro, Dirce M.T. Zanetta, Hanneke M. de Boer, Javier Espíndola, Claudio T. Miranda, Leonid Prilipko, Josemir W. Sander...5 Training the trainers and disseminating information: a strategy to educate health professionals on epilepsy Capacitações e multiplicadores: uma estratégia para educação de profissionais da área de saúde na epilepsia Paula T. Fernandes, Ana L.A. Noronha, Josemir W. Sander, Gail S. Bell, Li M. Li...14 Training medical students to improve the management of people with epilepsy Capacitação de estudantes de medicina para o atendimento de pacientes com epilepsia Ana L.A. Noronha, Paula T. Fernandes, Maria da Graça G. Andrade, Silvia M. Santiago, Josemir W. Sander, Li M. Li...23 Teachers perception about epilepsy Percepção de professores sobre epilepsia Paula T. Fernandes, Ana L.A. Noronha, Ulisses Araújo, Paula Cabral, Ricardo Pataro, Hanneke M. de Boer, Leonid Prilipko, Josemir W. Sander, Li M. Li...28 Stigma scale of epilepsy: validation process Escala de estigma na epilepsia: processo de validação Paula T. Fernandes, Priscila C.B. Salgado, Ana L.A. Noronha, Josemir W. Sander, Li M. Li...35

7 Arq Neuropsiquiatr 2007;65(Supl 1) Epilepsy perception amongst university students: a survey Percepção de epilepsia em estudantes universitários: uma enquete Juliana Caixeta, Paula T. Fernandes, Gail S. Bell, Josemir W. Sander, Li M. Li...43 Stigma and attitudes on epilepsy: a study with secondary school students Atitudes e estigma na epilepsia: um estudo com jovens do ensino médio Brenda A. Reno, Paula T. Fernandes, Gail S. Bell, Josemir W. Sander, Li M. Li...49 National epilepsy movement in Brazil Movimento nacional de epilepsia no Brasil Paula T. Fernandes, Ana L.A. Noronha, Josemir W. Sander, Li M. Li...55 Demonstration project on epilepsy in Brazil: outcome assessment Projeto demonstrativo em epilepsia no Brasil: avaliação do desfecho Li M. Li, Paula T. Fernandes, Ana L. A. Noronha, Lucia H. N. Marques, Moacir A. Borges, Karina Borges, Fernando Cendes, Carlos A. M. Guerreiro, Dirce M. T. Zanetta, Hanneke M. de Boer, Javier Espíndola, Claudio T. Miranda, Leonid Prilipko, Josemir W. Sander...58

8 Arq Neuropsiquiatr 2007;65(Supl 1):1-4 DEMONSTRATION PROJECT ON EPILEPSY IN BRAZIL WHO/ILAE/IBE GLOBAL CAMPAIGN AGAINST EPILEPSY A foreword PROJETO DEMONSTRATIVO EM EPILEPSIA NO BRASIL CAMPANHA GLOBAL CONTRA EPILEPSIA DA WHO/ILAE/IBE: PREÂMBULO Li M. Li 1,2, MD PhD; Paula T. Fernandes 1,2, MSc PhD; PhD; Hanneke M. de Boer 3,4 ; Leonid Prilipko 3,5, MD; Josemir W. Sander 4,6, MD PhD FRCP In 2002, ASPE (Assistência à Saúde de Pacientes com Epilepsia)* initiated an Epilepsy Demonstration Project (DP) in Brazil as part of the Global Campaign Against Epilepsy Epilepsy out of the Shadows, led by the World Health Organization (WHO), the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE) 1-4. Demonstration Projects have been carried out in several countries and their main aim is to develop treatment models for people with epilepsy in primary health care settings, improving the quality of life of people with epilepsy and their families 5-9. The project in Brazil has targeted areas in Campinas and São José do Rio Preto municipalities, both in São Paulo State, in Southeastern region 8. A task force has been established to assess strategies to expand this nationwide. The DP was carried out in six phases as shown in Figure 1. The Brazilian DP was officially closed during the IV Workshop of the WHO/ILAE/IBE Global Campaign Against Epilepsy Epilepsy out of the Shadows, held on May 4-5 th 2006, in Campinas. The workshop reviewed the results of the project and discussed the establishment of a National Epilepsy Policy. This supplement presents some results from all phases of the Brazilian DP which were discussed during the Workshop. In brief, we believe that the DP had an impact in our society and brought a new perspective on epilepsy. Awareness campaigns are now carried out on September 9 th (Epilepsy Awareness Day) annually in many sites around the country. Regulations and Bills related to epilepsy have been proposed in several regions. Epilepsy has been officially adopted as a theme to be considered in elementary education by the Ministry of Education. Currently, a National Epilepsy Programme, endorsed by the main Brazilian non-governmental organizations in the field of epilepsy, is under review at the Ministry of Health. We hope that this will benefit some of the many people with epilepsy in the country and will eventually bring epilepsy out of the shadows in Brazil. The Editors 1 Department of Neurology, Faculty of Medicine, UNICAMP, Campinas, SP, Brazil; 2 Assistência à Saúde de Pacientes com Epilepsia ASPE, Campinas, SP, Brazil; 3 Global Campaign Against Epilepsy Secretariat, Geneva, Switzerland; 4 Epilepsy Institute of the Netherlands, SEIN, Heemstede, Achterweg 5, 2103 SW Heemstede, the Netherlands; 5 Department of Mental Health and Substance Abuse World Health Organization, Geneva, Switzerland; 6 Department of Clinical and Experimental Epilepsy, UCL Institute of Neurology, London UK. *ASPE is a non-governmental organization founded in The ASPE mission is to promote bio-psycho-social health and to improve the quality of life of people with epilepsy and their families. The ASPE vision is to create centres of excellence and models of epilepsy in education, science and arts, guaranteeing integral and high quality assistance to people with epilepsy and their families.

9 2 Arq Neuropsiquiatr 2007;65(Supl 1) Phase I Epidemiological survey Case ascertainment Phase III Identification of stigma in the community Phase V Epidemiological survey Identification of stigma years Phase II Training of health professionals Training of teachers of elementary and high schools Phase IV Campaign in the media National phase Implementation at other sites Phase VI Analysis of the data Fig 1. Demonstration Project on Epilepsy in Brazil, a WHO/ILAE/IBE study from 2002 to Legend: The Demonstration Project on Epilepsy in Brazil, part of the WHO/ILAE/IBE Global Campaign initiative was carried out by ASPE (Assistência à Saúde de Pacientes com Epilepsia) from 2002 to The timeline shows the six phases in the study. PHASE 1 EPIDEMIOLOGICAL SURVEY The prevalence of epilepsy in Brazil is similar to that in other resource-poor countries, and the treatment gap is high 10,11. Epilepsy is more prevalent amongst less wealthy people, and elderly people (over 59 years old) are more likely to be affected by active epilepsy 11. Nevertheless the treatment gap is similar amongst the different social classes. Commitment of the Brazilian health system towards improvement of the quality of health management for people with epilepsy and consistent and regular AED supply is urgently needed 12 (article 1: Demonstration project on epilepsy in Brazil: situation assessment 13 ). PHASE 2 TRAINING COURSES The training courses were divided into three modules, for health professionals; trainers (article 2: Training the trainers and disseminating information: a strategy to educate health professionals on epilepsy 14 - and article 3: Training medical students to improve the management of people with epilepsy 15 ) and teachers (article 4: Teachers perception about epilepsy 16 ). The health professional training courses promote confidence in dealing with patients with epilepsy, better knowledge about the condition, fewer wrong beliefs and myths about epilepsy, more knowledge about dealing with AEDs and less referral to neurologists. The training the trainers course promotes low cost and highly effective actions in the management of epilepsy and can quickly expand the training program nationwide. Children may have negative perceptions about epilepsy 17. For this reason, it is important to develop continuous efforts in elementary schools to change the negative perceptions about epilepsy in our society. In this context, the teacher s educational courses were performed and the results showed that they were effective and had a long term effect on the knowledge, attitude and perception of teachers in elementary schools. PHASE 3 STIGMA IDENTIFICATION To performed this phase, we completed the conceptualization of stigma 18 and the elaboration of the instrument 19,20. The article presented here (article 5: Stigma scale of epilepsy: validation process 21 ) refers to the validation process of the Stigma Scale of Epilepsy, the first instrument to measure this perception in a poor-resource country. The final results of

10 Arq Neuropsiquiatr 2007;65(Supl 1) 3 this research performed with 1,850 people in the community showed that the negative social attitudes and feelings observed in certain segments of the community can create inappropriate behavior, difficulties in social relationships, work and school and consequently perpetuate stigma in society 22. The magnitude of stigma is different within different segments of local society (gender, social class, school level and religion) and for this reason, mass media campaigns should target these social segments in order to fight prejudice and improve the social acceptance of people with epilepsy 23. Also, we identify the epilepsy perception of university students (article 6: Epilepsy perception amongst university students: a survey 24 ), which is often negative. PHASE 4 MASS MEDIA We observed that the attitude (article 7: Stigma and attitudes on epilepsy: a study with secondary school students 25 ) and language expression 26 seems to have consequence in the stigma perception about epilepsy. In this context, we should consider the proper usage of language as it matters for bringing epilepsy out of the shadows. Furthermore, effective mass media campaigns 27 should consider specific language of the different segments of the society to take out labels and improve social acceptance and reduce epilepsy stigma 28. NATIONAL PHASE The modules created and developed in this DP (training, de-stigmatization, social network) can be implanted easily and tailored to the requirements of each region of the country This has been tested in several cities in the country (article 2: Training the trainers and disseminating information: a strategy to educate health professionals on epilepsy 14 ). Furthermore, the DP has been instrumental in sensitizing society 32,33 and bringing together related organizations for an awareness campaign carried out all over Brazil during the National Week of Epilepsy 34,35 (article 8: National epilepsy movement in Brazil 36 ). PHASE DATA ANALYSIS The developed model of epilepsy treatment for primary health level based on the existing health system with strategic actions centered on the health care providers and the community has been shown to be effective and efficient. We demonstrated that, using our model, people with epilepsy can be effectively treated at the primary health level, with important reductions in seizure frequency, as well as improvements in general well being. This model can be applied nationwide, as the key elements exist provided that the strategic measures are put forward in accordance with local health providers and managers (article 9: Demonstration Project on Epilepsy in Brazil: outcome assessment 37 ). REFERENCES 1. de Boer HM. Out of the shadows : a global campaign against epilepsy. Epilepsia 2002;43(Suppl 6): Reynolds EH. The ILAE/IBE/WHO Global campaign against epilepsy: bringing epilepsy Out of the shadows. Epilepsy Behav 2000;1: S3-S8. 3. Saraceno B. Global campaign against epilepsy: closing remarks. Epilepsia 2002;43(Suppl 6): Sander JW. Global campaign against epilepsy: overview of the demonstration projects. Epilepsia 2002;43(Suppl 6): Wang WZ, Wu JZ, Wang DS, et al. The prevalence and treatment gap in epilepsy in China: an ILAE/IBE/WHO study. Neurology 2003;60: Wang WZ, Wu JZ, Ma GY, et al. Efficacy assessment of phenobarbital in epilepsy: a large community-based intervention trial in rural China. Lancet Neurol 2006;5: Diop AG, de Boer HM, Mandlhate C, Prilipko L, Meinardi H. The global campaign against epilepsy in Africa. Acta Trop 2003;87: Li LM, Sander JW. National demonstration project on epilepsy in Brazil. Arq Neuropsiquiatr 2003;61: Ndoye NF, Sow AD, Diop AG, et al. Prevalence of epilepsy its treatment gap and knowledge, attitude and practice of its population in sub-urban Senegal an ILAE/IBE/WHO study. Seizure 2005;14: Noronha AL, Marques LH, Borges MA, Cendes F, Guerreiro CA, Min LL. Assessment of the epilepsy treatment gap in two cities of southeast of Brazil. Arq Neuropsiquiatr 2004;62: Noronha ALA, Borges A, Marques LH, et al. Prevalence and pattern of epilepsy treatment in different social-economic classes in Brazil. Epilepsia 2007;**(*):1-6, 2007, doi: /j Li LM, Fernandes PT, Mory S, et al. Managing epilepsy in the primary care network in Brazil: are health professionals prepared?. Rev Panam Salud Publica 2005;18: Li LM, Fernandes PT, Noronha AL, et al. Demonstration project on epilepsy in Brazil: situation assessment. Arq Neuropsiquiatr 2007; 65(Supl 1): Fernandes PT, Noronha AL, Sander JW, Bell GS, Li LM. Training the trainers and disseminating information: a strategy to educate health professionals on epilepsy. Arq Neuropsiquiatr 2007;65(Supl 1): Noronha AL, Fernandes PT, Andrade MGG, Santiago SM, Sander JW, Li LM. Training medical students to improve the management of people with epilepsy. Arq Neuropsiquiatr 2007;65(Supl 1): Fernandes PT, Noronha AL, Araújo U, et al. Teachers perception about epilepsy. Arq Neuropsiquiatr 2007;65(Supl 1): Fernandes PT, Cabral P, Araújo UF, Noronha ALA, Li LM. Kids' perception about epilepsy. Epilepsy Behav 2005;6: Fernandes PT, Salgado PC, Noronha ALA, Barbosa FD, Souza EA, Li LM. Stigma scale of epilepsy: conceptual issues. J Epilepsy Clin Neurophysiol 2004;10: Fernandes PT, Salgado PC, Noronha ALA, et al. Prejudice towards chronic diseases: comparison among AIDS, diabetes and epilepsy. Seizure 2007;in press doi: /j.seizure Salgado PC, Fernandes PT, Noronha AL, Barbosa FD, Souza EA, Li LM. The second step in the construction of a stigma scale of epilepsy. Arq Neuropsiquiatr 2005;63: Fernandes PT, Salgado PC, Noronha AL, Sander JW, Li LM. Stigma scale of epilepsy: validation process. Arq Neuropsiquiatr 2007;65(Supl 1):35-42.

11 4 Arq Neuropsiquiatr 2007;65(Supl 1) 22. Fernandes PT, Salgado PC, Noronha ALA, et al. Epilepsy stigma perception in an urban area of a limited resource country. Epilepsy Behav 2007;in press. 23. Fernandes PT, Li LM. Estigma na epilepsia Departamento de Neurologia - FCM/UNICAMP. PhD Thesis. 24. Caixeta J, Fernandes PT, Li LM. Epilepsy perception amongst university students: a survey. Arq Neuropsiquiatr 2007;65(Supl 1): Reno BA, Fernandes PT, Bell GS, Sander JW, Li LM. Stigma and attitudes on epilepsy: a study with secondary school students. Arq Neuropsiquiatr 2007;65(Supl 1): Fernandes PT, Li LM. Epileptic x person with epilepsy: does it matter? IV Congresso Latinoamericano de Epilepsia, Guatemala - Libro de resumes/abstract Book, Fernandes PT, Salgado PC, Noronha AL, Mory SB, Rio PA, Li LM. Combate ao estigma na epilepsia pela conscientização através da mídia. J Epilepsy Clin Neurophysiol 2004;10: Fernandes PT, Li LM. Percepção de estigma na epilepsia. J Epilepsy Clin Neurophysiol 2006;12: Fernandes PT, Noronha AL, Cendes F, Silvado C, Guerreiro CA, Li LM. Relatório do I Encontro Nacional de Associações e Grupos de Pacientes com Epilepsia. J Epilepsy Clin Neurophysiol 2003;9: Fernandes PT, Leitão LM, Souza RJ, Li LM. Relatório do II Encontro Nacional de Associações e Grupos de Pacientes com Epilepsia. J Epilepsy Clin Neurophysiol 2004;10: Fernandes PT, Souza RJ, Li LM. Relatório do III Encontro Nacional de Associações e Grupos de Pacientes com Epilepsia. J Epilepsy Clin Neurophysiol 2005;11: Fernandes PT, Salgado PC, Noronha AL, Mory SB, Li LM. A experiência ASPE no trabalho com grupos na epilepsia. Cadernos de Serviço Social 2004;25: Fernandes PT, Salgado PC, Noronha AL, Mory SB, Li LM. Formação de grupos como suporte psicológico e social na epilepsia. J Epilepsy Clin Neurophysiol 2004;10: Fernandes PT, Souza RJ, Li LM. Relatório da II Semana Nacional de Epilepsia. J Epilepsy Clin Neurophysiol 2004;10: Fernandes PT, Souza RJ, Li LM. Relatório da III Semana Nacional de Epilepsia. J Epilepsy Clin Neurophysiol 2005;11: Fernandes PT, Noronha AL, Sander JW, Li LM. National epilepsy movement in Brazil. Arq Neuropsiquiatr 2007;65(Supl 1): Li LM, Fernandes PT, Noronha ALA, et al. Demonstration project on epilepsy in Brazil: outcome assessment. Arq Neuropsiquiatr 2007; 65(Supl 1):58-62.

12 Arq Neuropsiquiatr 2007;65(Supl 1):5-13 DEMONSTRATION PROJECT ON EPILEPSY IN BRAZIL Situation assessment Li M. Li 1,2, MD, PhD; Paula T. Fernandes 1,2, MSc, PhD; Ana L.A. Noronha 1,2, MD, PhD; Lucia H.N. Marques 3, MD, PhD; Moacir A. Borges 3, MD, PhD; Fernando Cendes 1, MD, PhD; Carlos A.M. Guerreiro 1, MD, PhD; Dirce M.T. Zanetta 4, MD, PhD; Hanneke M. de Boer 5,6 ; Javier Espíndola 7, MD, PhD; Claudio T. Miranda 7, MD, PhD; Leonid Prilipko 5,8, MD; Josemir W. Sander 6,9, MD, PhD, FRCP ABSTRACT - 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 ] 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. 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 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%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 medicação. A enquete com os profissionais de 1 Department of Neurology, Faculty of Medicine, UNICAMP, Campinas, SP, Brazil; 2 Assistência à Saúde de Pacientes com Epilepsia - ASPE, Campinas, SP, Brazil; 3 Department of Neurology, Faculty of Medicine of São José do Rio Preto, São José do Rio Preto, Brazil; 4 Department of Epidemiology, Faculty of Medicine of São José do Rio Preto, São José do Rio Preto, SP, Brazil; 5 Global Campaign Against Epilepsy Secretariat, Geneva, Switzerland; 6 Epilepsy Institute of the Netherlands, SEIN, Heemstede, Achterweg 5, 2103 SW Heemstede, the Netherlands; 7 Pan-american Health Organization, Washington DC, USA; 8 Department of Mental Health and Substance Abuse World Health Organization, Geneva, Switzerland; 9 Department of Clinical and Experimental Epilepsy, UCL Institute of Neurology, London UK. Dr. Li Li Min - Department of Neurology / UNICAMP - Cx. Postal Campinas SP - Brazil. limin@fcm.unicamp.br or li@aspebrasil.org; Site:

13 6 Arq Neuropsiquiatr 2007;65(Supl 1) saúde mostrou que a média estimada de pacientes livre de crises sob os cuidados dos mesmos era de 60%. A média estimada de porcentagem em monoterapia era de 55%. A média estimada de porcentagem de referência para neurologistas era de 59%. A média estimada de porcentagem de pacientes que estavam trabalhando ou estudando era de 56%. 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 de sistema de notificação (SIAB Sistema de Informação da Atenção Básica), e iv) educação continuada de profissionais de saúde. O programa educacional deve ser amplo incluindo não somente manejo médico, mas também aspectos psico-sociais. PALAVRAS-CHAVE: epilepsia, droga-antiepiléptica, atenção primária, crise epiléptica. Brazil is a South American country of continental dimensions (8,511,965 km 2 ). It is divided into 27 federal units, and in 2000 had a population of 170 million. The gross internal product (GIP) of the country (2000) averaged 6,560 Brazilian Reais (~ US$ 2,630) per capita, with striking regional differences. The unemployment rate was estimated as around 6% in metropolitan areas in The illiteracy rate decreased from 25.5% in 1980 to 20% in 1991 and, in some regions in those less than 24 years old, is four percent. Thirty years ago, the population growth in Brazil was three percent per year, but presently is 1.9 percent mainly due to a falling birth rate. Eighty percent of the population has become urbanized in the last three decades, a fact which may have contributed to this marked decline in population growth. Brazil has a well-structured federal constitution which states that health is the right of every citizen and that it is the duty of the State to provide this. This has been stated in law since 1990 when the Unified Health System (Sistema Único de Saúde [SUS]) was created. SUS comprises the combined health care delivery of local, state, and federal organisations and institutions. The same law allows for the coexistence of private medicine in its various forms. It is estimated that SUS provides health care coverage to 77% of the population. Epilepsy is a common neurological disorder and affects approximately 50 million people worldwide, of whom five million live in Latin America and the Caribbean 1. Few epidemiological studies have been carried out in Brazil. In 1986 the prevalence of the epilepsies in Greater São Paulo was 11.9/1,000 (SP) 2, and in 1992 prevalences of 16.5 and 20.3/1,000 were found for active and inactive epilepsies respectively in Porto Alegre (RS) 3. The prevalence in São José do Rio Preto was 18.6/1, According to the Ministry of Health, the epilepsies rank 30 th among causes for hospitalization. Epilepsy was responsible for over 40 thousand hospital admissions per year in the early 1990s (approximately 0.54/1,000 inhabitants). It is unclear how many of these admissions are of patients in status epilepticus or with serial seizures. Risk factors such as parasitic diseases may explain the high incidence of epilepsy in developing countries, including Brazil. Neurocysticercosis is the most prevalent brain disease caused by parasites, and is endemic in the southeastern, south, and central-western regions of Brazil. It is the most frequently diagnosed risk factor associated with epilepsy in adults in these areas. Perinatal brain damage is also said to contribute to the high incidence of epilepsy, particularly in regions with inadequate ante-natal care. High incidence of road traffic accidents leading to traumatic brain injury may also be an important risk factor for epilepsy. Thus the basic strategy for primary prevention of epilepsy in a country like Brazil should include improved ante- and peri-natal care, control of infectious and parasitic diseases, and reduction of brain injury due to trauma and stroke. In addition to the increased risk of morbidity and mortality associated with epilepsy, patients face stigma placed on them by the community. Stigmatization prevents patients disclosing their condition, and may stop them seeking treatment. This clearly has an impact on employment, education, and ultimately on a patient s quality of life and societal inclusion. Knowledge about epilepsy by people in the general population is generally unsatisfactory and is surrounded by misperceptions. The lack of current information about epilepsy helps to perpetuate old prejudices against epilepsy. Treatment with first line antiepileptic drugs (AEDs) medication can render up to 70-80% of patients seizure-

14 Arq Neuropsiquiatr 2007;65(Supl 1) 7 free 5. In 1999, the most commonly prescribed AEDs in Brazil were carbamazepine (29%), clonazepam (22%), phenobarbital (17%), phenytoin (11%), and valproate (8%). These prescriptions came mainly from neurologists (45%), general practitioners (21%), psychiatrists (12%), and pediatricians (8%) 6. It has been estimated, however, that 70% of patients in developing countries do not receive antiepileptic drug treatment 7. The treatment gap has been estimated as being around 40% in Porto Alegre in Southern Brazil. A survey 8 in two cities (Campinas and São José do Rio Preto) estimated that the quantity of AEDs provided by the government in 2000 would treat 55% and 60% in each city respectively of the estimated pool of patients with epilepsy under SUS care. Some patients with partial epilepsy refractory to current AEDS are potentially candidates for surgical treatment, which can be highly effective, achieving total seizure control in up to two thirds of people. Candidates for epilepsy surgery are referred mainly to centres affiliated to the Federal Epilepsy Program Services or to private services. Currently, despite the many emerging centres for surgical treatment, only eight are approved by the Ministry of Health for epilepsy surgery; these are in São Paulo (5); Goiás (1), Paraná (1) and Rio Grande do Sul (1). Since 1997 a global effort to drive epilepsy out of the shadows has been promoted by the World Health Organization (WHO), the International League A- gainst Epilepsy (ILAE) and the International Bureau of Epilepsy (IBE) 9. In 2002 the Global Campaign entered the second phase of its activity, setting up demonstration projects (DPs) 10. The main objective of a DP is to demonstrate that a given set of procedures can provide a cost effective way to treat epilepsy 11. The participating countries within the second phase of the Global Campaign were Brazil, China, Zimbabwe and Senegal ASPE (Assistência à Saúde de Pacientes com Epilepsia), a non-governmental organization, was created to execute the DP in Brazil 15. The DP (duration four years) was launched in September 2002, and its framework is described in detail in the Appendix. This paper brings the results based on previous publications 16,17 of the phase I of the Demonstration Project on Epilepsy part of the WHO/ILAE/IBE Global Campaign Against Epilepsy, in Brazil 15. We aim to provide a concise overview of the situation regarding: i) the pharmacological treatment gap in the study area of the DP 16 and ii) the perceptions of primary health care workers on the management of people with epilepsy in the primary care setting 17. SITUATION ASSESSMENT In Phase I of the DP, a door-to-door community survey to assess the prevalence and treatment gap of epilepsy was conducted in three areas of two municipalities (Campinas and São José do Rio Preto [SJRP]) in Southeast Brazil. The total population in these three areas was 96,300 people. A validated epidemiological questionnaire with sensitivity 95.8% and specificity 97.8% for epilepsy screening was used, and a neurologist further ascertained the positive cases. A validated questionnaire based on a household possessions inventory was used to produce a socio-economic classification that ranges from Class Table 1. Treatment of active epilepsy according to social classes in Campinas and São José do Rio Preto 16. Adequate treatment Inadequate treatment Social classes Monotherapy Polytherapy Inadequate dosage (% [95% CI]) Non treated (% [CI]) Unknown (% [95%CI]) Active epilepsy (total number) Treatment gap (% [95%CI]) A (14.3 [2.6 to 51.3]) 1 (14.3 [2.6 to 51.3]) 1 (14.3 [2.6 to 51.3]) 7 3 (42.9 [6 to 79]) B (2.4 [0.4 to 12.6]) 5 (12.2 [5.3 to 25.5]) 5 (12.2 [5.3 to 25.5]) (26.8 [13 to 40]) C (15.4 [10.4 to 22.2]) 31 (21.7 [15.7 to 29.1]) 8 (5.6 [2.9 to 10.7]) (42.7 [35 to 51]) D+E (11.3 [6.5 to 19.2]) 18 (18.6 [12.1 to 27.4]) 5 (5.2 [2.2 to 11.5]) (35.1 [26 to 45]) Not classified 2 2 Total (12.1 [8.8 to 16.3]) 55 (19.0 [14.9 to 23.9]) 19 (6.6 [4.2 to 10]) (37.6 [32.2 to 43.3] )

15 8 Arq Neuropsiquiatr 2007;65(Supl 1) Table 2. Reasons given for being off treatment by people with active epilepsy 16. Reasons for not Campinas and São José do Rio Preto using medicine n % 95% CI Side effects to 12.3 Do not know about treatment to 24.0 Do not want treatment to 63.6 Medical orientation to 32.4 Never sought treatment to 24.0 Total A1 (highest) to E (lowest). We defined adequate epilepsy treatment as regular use of antiepileptic drugs (AEDs) at standard dosage. The lifetime prevalence of epilepsy was 9.2/1,000 people [95% CI ] and the estimated prevalence of active epilepsy was 5.4/1,000 people. The prevalence of active epilepsy was higher in the more deprived social classes (7.5/ 1,000 in Class D+E compared with 1.6/1,000 in Class A). The prevalence of active epilepsy was also higher in elderly people (8.5/1,000 in those aged 60 years or older). Sixty-two percent of people with active epilepsy were on adequate treatment, the remaining 38% were not; this included 19% who were not on any medication; the figures were similar in different socioeconomic groups (Table 1). The reasons for the treatment gap may be multifactorial 16, ranging from logistic aspects of health care delivery to ignorance of the existence of medical treatment. In our study, the treatment gap was defined as no or inadequate treatment. The main reason given by people with active epilepsy who were not on treatment was that they were not keen on treatment (Table 2). It is important to point out that in this group of patients without medication around one quarter either never sought medical treatment or were not aware of the existence of medical treatment for the condition. Campinas and São José do Rio Preto are located in one of the wealthier regions of Brazil, and there is a good public and private health care system available. Therefore, our findings are likely to represent the best scenario in the spectrum of epilepsy management in Brazil. To assess the perception of primary health care workers on the management of people with epilepsy in the primary care setting we carried out a survey of 598 professionals allied to medicine and physicians from the Family Physician Program. The participants of this survey were interviewed using a structured questionnaire during a National Meeting of Family Physicians. The information collected reflects an educated guess rather than real data on the primary health care system. Nevertheless we believe that the study is adequate for obtaining an overview of how primary health care professionals perceive epilepsy, and the current state of its management in Brazil. Overall both professionals allied to medicine and physicians had an appropriate perception of epilepsy. The survey of physicians estimated that 0.78% (n=286, range 0% to 8%, median=0.37%) of the population had consulted them for epilepsy in the previous year. This estimate is relatively close to the estimated prevalence of epilepsy. Contrary to the negative impression of the primary health care system, the data seem to suggest that people with epilepsy seek help in the primary health care system. Nevertheless, a number of physicians, mostly paediatricians, stated that they saw a higher percentage (>3%) of the population for epilepsy; which may suggest that either there is a higher prevalence of epilepsy in the paediatric age group, or that epilepsy is over-diagnosed. Misdiagnosis is not uncommon in the paediatric age group. This is particularly so in cases of febrile seizures, which are often erroneously considered as epilepsy and often treated with long-term AED therapy. It has been estimated that 70% of people with epilepsy can achieve seizure control with one AED 5 ; these are the people who might be expected to be under the care of primary care physicians. Nevertheless, only 55% (n=289, range 0% to 100%) of patients were estimated by physicians to be on monotherapy and 60% (n=287, range 0% to 100%, median=70%) of patients were estimated to be seizurefree. The survey showed that 59% (n=303, range 0% to 100%) of patients are referred to neurologists and one-third for psychological support. Possible interpretations could be either that the physicians are dealing not only with low complexity cases, or that treatment is inadequate. The former interpretation

16 Arq Neuropsiquiatr 2007;65(Supl 1) 9 would reflect inefficient referral systems to secondary or tertiary health care level. The latter interpretation would therefore be more likely to be correct, as it is common to find inadequate AED therapy in the community (either no AEDs or AEDs used in suboptimal dosage), and if the treatment were adequate one would expect a lower referral figure than that observed. Either interpretation, together with the fact that a majority (73%) of health professionals do not feel confident in managing people with epilepsy, reinforces the necessity of providing training in the management of people with epilepsy. This would be feasible, as 90% of physicians who did not feel confident in managing people with epilepsy said they would participate in a training course for improving the quality of health management. Social inclusion appeared to be an important issue, as only half of the patients were thought to be socially engaged. This number probably reflects the rate of seizure-free patients, as patients who are not seizure-free have lower chances of getting a job or going to school. The situation assessment derived from phase 1 in the catchment areas of the DP showed that the prevalence of epilepsy is similar to other resource-poor countries, and that the treatment gap is high. One of the important factors contributing to the treatment gap is inadequacy of health care delivery. The situation could readily be changed 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 psychological support for people with epilepsy and the management of social aspects of epilepsy. APPENDIX DEMONSTRATION PROJECT PROTOCOL DESIGN This protocol is for a demonstration project testing the feasibility of diagnosing and treating epilepsy at primary care level with rational use of first line antiepileptic drugs (phenobarbital, phenytoin, carbamazepine and valproic acid). The long-term aim is to integrate epilepsy management into the existing primary health delivery system in a sustainable manner. If this project is shown to be effective it will be recommended for implementation nationwide. Overall aims To generate procedures that will improve the identification and management of people with epilepsy in urban areas within the existing primary health care system and with community participation. To develop a model of epilepsy treatment at primary health level that can be applied nationwide Specific aims 1. To assess current management practices (identification, treatment, and follow-up) of patients with epilepsy in urban areas of the country. 2. To estimate: a) the prevalence of active forms of epilepsy, b) the size of the treatment gap via an active case-finding methodology, and c) changes that this project may bring to these figures in the study area. 3. To ascertain the etiology and risk factors associated with epilepsy in the community. 4. To reduce and eradicate preventable causes of epilepsy in the community. 5. To ascertain the knowledge, attitudes and practice (KAP) of epilepsy amongst health practitioners at primary health level prior to the study and after they have undergone training for epilepsy. 6. To develop technical norms for identification, education, treatment and follow-up of patients with epilepsy at primary health care level 7. To carry out a feasibility study of the treatment of forms of epilepsy using first line antiepileptic drugs by primary health care physicians. 8. To develop strategies for the implementation of a cost-effective surgical program for the treatment of epilepsy. 9. To develop a program for continuous professional education on epilepsy for primary health workers. 10. To promote public awareness about epilepsy via an educational program aimed at the community. 11. To promote continuing education for primary and secondary school teachers and dissemination of information on epilepsy. 12. To develop a program to de-stigmatize epilepsy and improve its social acceptance. 13. To develop local advocacy and support groups for people with epilepsy. 14. To reduce the economic and social burden of epilepsy in the study areas. Methodology This demonstration project has three parts. 1. Epidemiological estimation This will provide a realistic estimation of the prevalence of epilepsy and of untreated active epilepsy in the study area.

17 10 Arq Neuropsiquiatr 2007;65(Supl 1) Phase I Epidemiological survey Case ascertainment Phase III Identification of stigma in the community Phase V Epidemiological survey Identification of stigma years Phase II Training of health professionals Training of teachers of elementary and high schools Phase IV Campaign in the media National phase Implementation at other sites Phase VI Analysis of the data Fig 1. Timeline of demonstration project in Brazil. 2. Service delivery (intervention study) This will cover the issues of diagnosis, AED treatment, followup and referral networks. 3. Education, social and community intervention This will cover the educational and social aspects of the project Timeline This is a four year project subdivided into six phases as show in Figure 1. Setting The State of São Paulo is located in Southeast Brazil. It is one of the country s most populous and prosperous states. The region of Campinas, one of the five large regions in the State of São Paulo, comprises 95 urban communities and has a population of around 4.7 million. This region is responsible for nine percent of the national GIP. The city of Campinas has approximately one million inhabitants. The region of São José do Rio Preto comprises 96 municipalities and belongs to the eighth administrative region of the State of São Paulo. The city of São José do Rio Preto has approximately 340,000 inhabitants. The health care systems of Campinas and São José do Rio Preto have primary, secondary, and tertiary care centers. Primary care consists of home care, health centers general support clinics, and diagnostic and therapeutic support services (Serviço de Atendimento Diagnóstico e Terapêutico - SADT). On a secondary level, as well as SADT, there are specialized outpatient clinics and local and macro regional hospitals. On a tertiary level, there are specialized outpatient clinics (University Hospitals), regional hospitals, and SADT. The district of Barão Geraldo is located in the north of Campinas. It has a structured health care system, with a primary health center that is undergoing expansion to serve 60% of the local population of around 40,000 inhabitants. The health center has four teams, each with a general physician, a pediatrician and a nurse, responsible for the subregions. A new program based on the concept of family physician is being implemented and should add to the existing setup in middle of The hospital complex of the State University of Campinas (UNICAMP) is the main referral tertiary center in the Campinas region. It has 597 beds and provides 450 thousand medical consultations a year, 22 thousand admissions, and 460 thousand non-medical appointments (social services, psychology, occupational therapy, audiology, pedagogy and physiotherapy) each year. The Neurology Department of UNICAMP has specialized clinics for adult and pediatric patients with epilepsy, and includes a surgical program for patients with medically refractory epilepsies. Patients with epilepsies are largely referred by health centers, emergency clinics and general clinics in the city and region of Campinas (55%), from other nearby regions (40%) and also from other states (5%). The districts of Santo Antonio and Jaguaré are located in the northwest, Region IX of São José do Rio Preto. This has a structured primary health sys-

18 Arq Neuropsiquiatr 2007;65(Supl 1) 11 tem with a family physician program and is open 24 hours. Each center is designed to provide 100% health care cover for 55,000 inhabitants in the region (25,000 are covered by the health center in Santo Antonio and 30,000 in Jaguaré). In these two centers, there are 80 physicians and 16 nurses in total, plus social assistants, technicians and auxiliary nurses. There is no efficient referral system to the tertiary center for patients with epilepsy. The hospital complex of Hospital de Base is a part of the Faculty of Medicine and is the main referral tertiary center in the São José do Rio Preto Region. It has 550 beds and provides 30,000 out-patient consultations and 3,320 admissions each month. The Neurology Department has specialized clinics for adult and pediatric patients with epilepsy. A new prolonged video-eeg monitoring unit has been recently established and a surgical program for treatment of epilepsy is being set up. Referral network for the study Patients with a diagnosis of epilepsy screened by the active search, self reported or referred by another health center will initially be interviewed and examined by a physician at the primary health center, who will complete the protocol and make a diagnosis. The patient will then be seen by a neurologist at a tertiary center who will confirm or refute the diagnosis and send the patient back to the referring physician for treatment and/or follow-up. This process of referral-and-contra-referral will take two to three weeks. It is expected with time that physicians at the primary health center will become more knowledgeable and confident in making the diagnosis, thus the need for referral for the purpose of diagnosis will decrease. Patients who do not respond to medication (not attaining seizure-freedom) within three months after reaching the maximal tolerated dose of AED, or those in whom unpredicted problems arise, will be re-evaluated by a neurologist at a tertiary center. The process of referral will take one to two weeks. In cases of emergency, e.g. status epilepticus, patients will be referred to the emergency service of a tertiary center. Definitions For the purpose of this study the following definitions will be used: Active epilepsy Someone who has suffered two or more unprovoked seizures in the 12 months immediately preceding identification by study officials is defined as having active epilepsy. Unprovoked seizures These are defined as epileptic seizures not associated with a clear precipitant or triggering factor (such as drug, fever, acute head injury, acute cerebro-vascular accident, acute metabolic imbalance). Untreated epilepsy Any patient with active epilepsy who has not received regular antiepileptic drug treatment in the week preceding identification by study officials is defined as having untreated epilepsy. Appropriate treatment Appropriate treatment of active epilepsy includes the diagnosis and treatment of underlying causes, as well as treatment of recurrent seizures according to international standards, using anti-epileptic drugs and surgery whenever indicated. Treatment gap This is defined 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. Treatment of patients Patients with a confirmed diagnosis of epilepsy who wish to participate in this study will be enrolled in the study protocol. Health assistants at the primary health center will be responsible for explaining the nature of this study, obtaining written consent and completing study entry forms (number 331/2002). Physicians at the primary health centers will be responsible for prescribing medication (following a guideline for AED prescription), and completing the medical report forms. Demographic details, estimation of number of seizures, particularly convulsions, that the patient has experienced in the previous, week, month, and year will be recorded. A record of the current occupational status of the patient (work and school) will be made. If the patient is employed or attends school, an estimation of absenteeism from work or school due to epilepsy will be made and recorded. The clinician or pediatrician will explain to the patient and relatives the importance of adherence to the medication regime, and how the medication should be used. They will also explain to the patients about potential side-effects, and advise the patient to report any experienced to the physician who started the treatment. Patients will receive a health card with follow-up appointment dates. During the first two months, each patient will return every two weeks to adjust medication. Patients will also be evaluated by a neurologist; after the initial assessment, each