RESUMO
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.
Assuntos
Epilepsia/psicologia , Epilepsia/terapia , Conhecimentos, Atitudes e Prática em Saúde , Adolescente , Adulto , Idoso , China/epidemiologia , Efeitos Psicossociais da Doença , Coleta de Dados , Educação , Epilepsia/epidemiologia , Família , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , População Rural , Inquéritos e Questionários , Adulto JovemAssuntos
Anticonvulsivantes/uso terapêutico , Epilepsia/tratamento farmacológico , Fenobarbital/uso terapêutico , Atenção Primária à Saúde/métodos , Adolescente , Adulto , Anticonvulsivantes/economia , Criança , Pré-Escolar , China/epidemiologia , Custos e Análise de Custo , Intervalo Livre de Doença , Esquema de Medicação , Custos de Medicamentos , Epilepsia/economia , Epilepsia/epidemiologia , Feminino , Seguimentos , Custos de Cuidados de Saúde , Humanos , Agências Internacionais , Masculino , Pessoa de Meia-Idade , Fenobarbital/economia , População Rural/estatística & dados numéricos , Resultado do Tratamento , Organização Mundial da SaúdeRESUMO
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.
Assuntos
Epilepsia/prevenção & controle , Saúde Global , Avaliação de Programas e Projetos de Saúde/estatística & dados numéricos , População Rural/estatística & dados numéricos , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Anticonvulsivantes/uso terapêutico , Criança , Pré-Escolar , China/epidemiologia , Epilepsia/diagnóstico , Epilepsia/tratamento farmacológico , Epilepsia/epidemiologia , Feminino , Inquéritos Epidemiológicos , Humanos , Masculino , Pessoa de Meia-Idade , Prevalência , Desenvolvimento de Programas/estatística & dados numéricos , Adulto JovemRESUMO
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.
Assuntos
Atitude Frente a Saúde , Epilepsia/etnologia , Conhecimentos, Atitudes e Prática em Saúde , Preconceito , Percepção Social , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Brasil , Criança , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Conformidade Social , População UrbanaRESUMO
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.
Assuntos
Anticonvulsivantes/uso terapêutico , Epilepsia/tratamento farmacológico , Pessoal de Saúde , Atenção Primária à Saúde/normas , Avaliação de Processos em Cuidados de Saúde , Brasil/epidemiologia , Epilepsia/epidemiologia , Humanos , Prevalência , Atenção Primária à Saúde/estatística & dados numéricos , Fatores SocioeconômicosRESUMO
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.
Assuntos
Epilepsia/psicologia , Docentes/estatística & dados numéricos , Conhecimentos, Atitudes e Prática em Saúde , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e QuestionáriosRESUMO
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.
Assuntos
Epilepsia/terapia , Avaliação de Resultados em Cuidados de Saúde , Atenção Primária à Saúde/normas , Absenteísmo , Adaptação Psicológica , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Brasil , Criança , Pré-Escolar , Epilepsia/psicologia , Feminino , Seguimentos , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Avaliação de Programas e Projetos de Saúde , Qualidade de Vida , Ajustamento Social , Resultado do TratamentoRESUMO
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...
Assuntos
Humanos , Anticonvulsivantes/uso terapêutico , Epilepsia/tratamento farmacológico , Pessoal de Saúde , Avaliação de Processos em Cuidados de Saúde , Atenção Primária à Saúde/normas , Brasil/epidemiologia , Epilepsia/epidemiologia , Prevalência , Atenção Primária à Saúde/estatística & dados numéricos , Fatores SocioeconômicosRESUMO
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...
Assuntos
Humanos , Masculino , Feminino , Adulto , Pessoa de Meia-Idade , Epilepsia , Docentes/estatística & dados numéricos , Conhecimentos, Atitudes e Prática em Saúde , Inquéritos e QuestionáriosRESUMO
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.
Assuntos
Humanos , Masculino , Feminino , Pré-Escolar , Criança , Adolescente , Adulto , Pessoa de Meia-Idade , Idoso de 80 Anos ou mais , Epilepsia/terapia , Avaliação de Resultados em Cuidados de Saúde , Atenção Primária à Saúde/normas , Absenteísmo , Adaptação Psicológica , Brasil , Epilepsia/psicologia , Seguimentos , Entrevistas como Assunto , Avaliação de Programas e Projetos de Saúde , Qualidade de Vida , Ajustamento Social , Resultado do TratamentoRESUMO
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 resource-poor 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.
Assuntos
Epilepsia/tratamento farmacológico , Epilepsia/epidemiologia , Acessibilidade aos Serviços de Saúde , Classe Social , Adolescente , Adulto , Fatores Etários , Anticonvulsivantes/uso terapêutico , Brasil/epidemiologia , Criança , Pré-Escolar , Quimioterapia Combinada , Feminino , Pesquisas sobre Atenção à Saúde , Educação em Saúde , Acessibilidade aos Serviços de Saúde/normas , Humanos , Masculino , Indigência Médica/estatística & dados numéricos , Pessoa de Meia-Idade , Pobreza/estatística & dados numéricos , Prevalência , Inquéritos e QuestionáriosRESUMO
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.
Assuntos
Epilepsia/mortalidade , Adolescente , Adulto , Fatores Etários , Idoso , Idoso de 80 Anos ou mais , Anticonvulsivantes/uso terapêutico , Causas de Morte , Criança , Pré-Escolar , China/epidemiologia , Estudos de Coortes , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Fenobarbital/uso terapêutico , Estudos Prospectivos , População Rural , Organização Mundial da SaúdeRESUMO
PURPOSE: Information about existing resources available within the countries to tackle the huge medical, social, and economic burden caused by epilepsy is lacking. To fill this information gap, a survey of country resources available for epilepsy care was conducted within the framework of the ILAE/IBE/WHO Global Campaign Against Epilepsy. METHODS: The study represents a major collaborative effort involving the World Health Organization (WHO), the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE). RESULTS: Data were collected from 160 countries representing 97.5% of the world population. The information included availability, role, and involvement of professional and patient associations for epilepsy, epilepsy treatment and services including antiepileptic drugs, human resources involved in epilepsy care, teaching in epileptology, disability benefits, and problems encountered by people with epilepsy and health professionals involved in epilepsy care. The data confirm that epilepsy care is grossly inadequate compared with the needs in most countries. In addition, large inequities exist across regions and income groups of countries, with low-income countries having extremely meager resources. Complete results of this survey can be found in the Atlas: Epilepsy Care in the World. CONCLUSIONS: The data reinforce the need for urgent, substantial, and systematic action to enhance resources for epilepsy care, especially in low-income countries.
Assuntos
Epilepsia/terapia , Saúde Global , Pesquisas sobre Atenção à Saúde/estatística & dados numéricos , Comparação Transcultural , Bases de Dados como Assunto/estatística & dados numéricos , Atenção à Saúde/normas , Países em Desenvolvimento/estatística & dados numéricos , Documentação/estatística & dados numéricos , Necessidades e Demandas de Serviços de Saúde/estatística & dados numéricos , Humanos , Renda/estatística & dados numéricos , Agências Internacionais , Cooperação Internacional , Pobreza/estatística & dados numéricos , Saúde Pública/estatística & dados numéricos , Obras de Referência , Inquéritos e Questionários , Organização Mundial da SaúdeRESUMO
According to the findings obtained in the context of a Global Initiative on Neurology and Public Health carried out by the World Health Organization (WHO), there has been a lack of reliable and comparative data on services and other resources for neurological disorders in many parts of the world. In view of these findings and in collaboration with the World Federation of Neurology (WFN), WHO has recently organized an international Survey of Country Resources for Neurological Disorders, which involved 109 countries and covered over 90% of the world's population. This large WHO/WFN collaborative endeavour collected expert information on a number of aspects of neurological care provision around the world including availability of neurological services in primary care; human resources for neurological disorders; sub-specialized neurological services; primary method of financing of neurological care; and disability benefits for patients with neurological disorders. The WHO/WFN Survey results clearly demonstrate that there are inadequate resources for patients with neurological disorders in most parts of the world, and highlight inequalities in the access to neurological care across different populations, and in particular in those living in low-income countries and in developing regions of the world. The key findings of the WHO/WFN Survey including their impact on delivery of neurological care around the world are presented and discussed in this paper. The entire set of WHO/WFN Survey results including numerous tables, graphs and accompanying commentaries can be found in the WHO/WFN Atlas of Country Resources for Neurological Disorders, which is available on request from WHO or at http://www.who.int/mental_health/neurology/ .
Assuntos
Saúde Global , Pesquisas sobre Atenção à Saúde , Serviços de Saúde/estatística & dados numéricos , Doenças do Sistema Nervoso , Serviços de Saúde/economia , Número de Leitos em Hospital , Humanos , Seguro por Deficiência , Cooperação Internacional , Assistência ao Paciente/economia , Assistência ao Paciente/estatística & dados numéricos , Atenção Primária à Saúde/economia , Atenção Primária à Saúde/estatística & dados numéricos , Recursos Humanos , Organização Mundial da SaúdeRESUMO
PURPOSE: To demonstrate the application of Disability Adjusted Life Year (DALY) as an aid in health outcome measures to evaluate the epilepsy disease burden in rural China and to provide Chinese data to achieve a better understanding of disease burden due to epilepsy. METHODS: The DALY is the sum of the number of years of survival with disability (Years Lived with Disability, YLD) and the number of years lost because of premature mortality (Years of Life Lost, YLL). We calculated the YLD based on the prevalence survey of epilepsy among 66,393 people sampled in Heilongjiang, Henan, Jiangsu, Ningxia, Shanghai, and Shanxi provinces in 2000. The epilepsy mortality data from Chinese literature provided the YLL due to epilepsy. We applied sensitivity analysis to evaluate the influence of uncertainty on the epilepsy mortality value and disability weight in the study. RESULTS: In 2000, epilepsy caused 1.83 and 2.48 DALY lost per 1,000 population in Henan and Ningxia province, which had the lowest and the highest DALY lost among the six study areas. Overall, epilepsy caused 1.41 YLLs and 0.67 YLDs per 1,000 population; thus the DALYs lost because of epilepsy was 2.08 per 1,000 population, representing the epilepsy disease burden in rural China. CONCLUSIONS: The DALY measure, which includes the extent of disability from epilepsy, provides a useful tool for the epilepsy disease burden assessment. The disease burden of epilepsy in China is considered higher than previous estimations.
Assuntos
Efeitos Psicossociais da Doença , Avaliação da Deficiência , Epilepsia/diagnóstico , Anos de Vida Ajustados por Qualidade de Vida , Adolescente , Adulto , Idoso , Causas de Morte , Criança , Pré-Escolar , China/epidemiologia , Epilepsia/epidemiologia , Epilepsia/mortalidade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Mortalidade , Avaliação de Resultados em Cuidados de Saúde , Prevalência , População Rural/estatística & dados numéricos , Análise de SobrevidaRESUMO
OBJECTIVE: To assess attitudes and beliefs concerning epilepsy held by physicians and allied health professionals who work in the primary care network in Brazil. METHODS: The data were collected during a national family and community medicine conference held in Rio de Janeiro in 2004, which was attended by 1,200 health professionals from throughout the country. Two questionnaires were used, one for physicians and another for nonphysician health workers. RESULTS: A total of 598 conference participants (345 physicians and 253 nonphysician health professionals) completed a questionnaire. Both the physicians and the nonphysician health professionals had acceptable personal attitudes towards persons with epilepsy. According to data from 286 physicians who provided information, the estimated mean percentage of individuals with epilepsy in the populations cared for by the physicians' health care systems in the preceding year was 0.78% (range, 0 to 8%; median = 0.37%). The estimated mean percentage of seizure-free patients was 60%. The estimated mean percentage of persons on monotherapy was 55%. The estimated mean percentage of referrals to a neurologist was 59%. The estimated mean percentage of patients who were working or studying was 56%. Of the 345 physicians, 252 of them (73%) reported not feeling confident about managing individuals with epilepsy, whereas 84 (24%) felt confident, and 9 (3%) were not sure. Of the 252 physicians who did not feel confident, 226 (90%) said that they would participate in a training program to improve the quality of the care provided to individuals with epilepsy. CONCLUSIONS: The professionals participating in the study indicated that the primary care system has the essential elements needed to provide comprehensive epilepsy care, including professional personnel who want to improve their skills. However, establishing an efficient, effective program of epilepsy management in the primary care network will require an effective referral network, regular distribution of antiepileptic drugs, the close monitoring of epilepsy management by using the federal primary health information system, and the ongoing education of health professionals, with emphasis on psychological support and the inclusion in society of individuals with epilepsy.
Assuntos
Competência Clínica , Epilepsia/terapia , Atenção Primária à Saúde/normas , Adolescente , Adulto , Brasil , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e QuestionáriosRESUMO
OBJETIVO: Identificar a percepção quanto à epilepsia dos profissionais médicos e não-médicos que atuam na rede básica de saúde no Brasil. MÉTODO: Os dados foram coletados durante o VI Congresso Brasileiro de Medicina de Família e Comunidade e VI Congresso de Medicina Familiar, realizados em 2004 no Rio de Janeiro, com 1 200 participantes de todo o Brasil. Foram aplicados dois questionários, um para os médicos e outro para profissionais não-médicos da área da saúde. RESULTADOS: Quinhentas e noventa e oito pessoas responderam aos questionários. Tanto os 345 médicos como os 253 não-médicos mostraram uma percepção adequada sobre a epilepsia. A porcentagem média estimada (auto-informada) de pessoas com epilepsia na população atendida pelos profissionais que participaram do estudo foi de 0,78 por cento (286 respostas; 0 a 8 por cento; mediana = 0,37 por cento); de pacientes com crises controladas, 60 por cento; de pacientes em monoterapia, 55 por cento; de médicos que encaminhavam seus pacientes para o neurologista, 59 por cento; e de pacientes que estavam trabalhando ou estudando, 56 por cento. Do total de médicos, 252 (73 por cento) informaram não se sentir seguros no manejo de pessoas com epilepsia, enquanto 84 (24 por cento) sentiam-se seguros e nove (3 por cento) não sabiam; dos 252 médicos que se sentiam inseguros, 226 (90 por cento) disseram que participariam de um treinamento para melhorar a qualidade do atendimento médico na epilepsia. CONCLUSÃO: Os profissionais que participaram do estudo, atuantes no sistema básico de saúde, indicaram que o sistema tem os elementos fundamentais para o tratamento integral da epilepsia. Contudo, para garantir o estabelecimento de um programa efetivo e eficiente de manejo da epilepsia na rede básica, são necessárias: uma rede de referência e contra-referência, a distribuição contínua de drogas anti-epilépticas, a monitorização do manejo da epilepsia pelo Sistema de Informação da Atenção Básica do governo federal e a educação continuada de profissionais de saúde, com ênfase inclusive no apoio psicológico e inserção social dos pacientes portadores de epilepsia.
Assuntos
Adolescente , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Competência Clínica , Epilepsia/terapia , Atenção Primária à Saúde/normas , Brasil , Inquéritos e QuestionáriosRESUMO
One of the leading brain disorders in developing countries is represented by epilepsy. It is estimated that 80% of people suffering from epilepsy around the world, reside in developing world such as Africa. Many perinatal and postnatal causes are brain-stressers in people suffering from malnutrition and low economical conditions. This context is characterised by long delay before modern treatment, reduced number and financial inaccessibility to anti-epileptic drugs (AEDs) and limited human and technical resources for epilepsy. Cultural interpretation also contributes to exclude epileptic patients from the educational and productive fields, aggravating the burden they face and favouring a treatment gap estimated to 80%. To fight against this dramatic reality, a partnership has been built between the International League against Epilepsy, the International Bureau for Epilepsy and the World Health Organisation, named the "Global Campaign Against Epilepsy" "Epilepsy Out of the Shadows" to reduce treatment gap and social and physical burden, educate health personnel, dispel stigma, support prevention.