Publications by authors named "Hanneke M De Boer"

We conducted a survey to assess public awareness of epilepsy and stigma expression in different social groups in Tbilisi, Georgia. Respondents were divided into those from a medical or paramedical background, those with a nonmedical professional background, and a group with unskilled workers or unemployed individuals. One thousand and sixteen people completed a Knowledge, Attitude and Perception questionnaire.

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Purpose Of Review: Epilepsy can hijack the lives of many persons of all ages. It is an unpredictable disease that can manifest itself in seizures, brain damage and cognitive and psychiatric disabilities, although some people with epilepsy can have a relatively normal life. People with epilepsy are among the most vulnerable in any society because the disease is misunderstood and often stigmatizing.

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Purpose: Detailed data on the mortality of epilepsy are still lacking from resource-poor settings. We conducted a long-term follow-up survey in a cohort of people with convulsive epilepsy in rural areas of China. In this longitudinal prospective study we investigated the causes of death and premature mortality risk among people with epilepsy.

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Purpose: To evaluate the long-term outcome of phenobarbital treatment for convulsive epilepsy in rural China, and to explore factors associated with overall seizure outcomes.

Methods: We carried out follow-up assessments of people who took part in an epilepsy community management program conducted in rural counties of six provinces in China. People with convulsive epilepsy who were previously untreated (or on irregular treatment) were commenced on regular treatment with phenobarbital.

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Background: Phenobarbital is an effective treatment for epilepsy but concerns remain over its potential neurocognitive toxicity. This prospective study evaluated the effects of phenobarbital treatment on cognition and mood in people with epilepsy in rural China.

Methods: We recruited 144 adults with convulsive seizures and 144 healthy controls from six sites in rural China.

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Introduction: Data on the prevalence of epilepsy and the extent of its treatment gap are important for planning health care delivery for people with epilepsy. The prevalence of active epilepsy in Georgia prior to the social and political re-organization in the early 1990s was estimated at around 5.7 per 1000.

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Stigma and exclusion are common features of epilepsy in both the developed and developing countries and a major contributor to the burden associated with the condition. Reducing the stigma of epilepsy is key to reducing its impact and so improving quality of life. The social consequences of having epilepsy can be enormous, be it that they vary from country to country, based on cultural differences and economic circumstances.

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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.

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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.

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Epilepsy is one of the most prevalent neurological conditions and it knows no age, racial, social class, geographic, or national boundaries. The impact of epilepsy rests not only on the individual patient, but also on the family and indirectly on the community. The burden of epilepsy may be due to the physical hazards of epilepsy resulting from the unpredictability of seizures; the social exclusion as a result of negative attitudes of others toward people with epilepsy; and the stigma, as children with epilepsy may be banned from school, adults may be barred from marriage, and employment is often denied, even when seizures would not render the work unsuitable or unsafe.

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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).

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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.

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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.

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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.

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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.

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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.

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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).

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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.

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Even though it is now the viewpoint of the majority of professionals working in epilepsy care that most people with epilepsy should and can perform on the labor market as does anybody else, research tells a different story. Most figures concerning employment rates of people with epilepsy indicate that they do not perform as well on the labor market as others do. Although both research figures and research groups vary, generally unemployment rates are higher for people with epilepsy than for the general population.

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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.

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