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Introduction and situation analysis:
Brazil is a country of continental dimensions (8,511,965 km2) located in South America. It is divided into 32 federal units. According to the census of 2000 it has a population of 170 million inhabitants. It has been a Republic since 1889 with a government consisting of three powers: Executive, Legislative and Judiciary. It has an elected President, National Congress (Congress and Senate), and a Supreme Court.
The gross internal product (GIP) of the country (2000) averaged R$6,559.94 (US$2,630.00) per capita, but with striking regional differences. The unemployment rate has been estimated to be around 6% in metropolitan areas (2000). The illiteracy rate decreased from 25.5% in 1980 to 20% in 1991. In southern and south-eastern regions the illiteracy rate of those younger than 24 years is 4% (1991).
Brazil has a well-structured federal constitution which states that health is the right of every citizen and the duty of the State. This became official state policy by a law passed on September 19th 1990 thereby creating the Unified Health System (Sistema Único de Saúde [SUS]). It is estimated that SUS provides health care coverage to 77% of the population in Latin America and the Caribbean. Few epidemiological studies have been carried out in Brazil. Marino et al. (1986) found a prevalence of epilepsies. According to data accessed by the Ministry of Health, epilepsies rank 30th place among the principal causes for hospitalization. Possibly the majority of these is comprised of patients with status epilepticus or with frequent seizures. Parasitic diseases are risk factors which may explain the high incidence of epilepsy in developing countries, including Brazil.
Main causes of epilepsy in the country are:
- Neurocysticercosis is the most prevalent of these parasites, and it is endemic in the south-eastern, south, and central-western regions. It is the most often diagnosed risk factor associated with epilepsy in adults in these areas.
- Perinatal brain damage is another risk factor to explain the high incidence of epilepsy. This is possibly true in regions with inadequate prenatal care.
- High incidence of motor vehicle accidents leading to traumatic brain injury is also an important risk factor of epilepsy.
The basic strategy for the prevention of epilepsy, in a country like Brazil, should include prenatal care, safe delivery, control of infectious and parasitic diseases, and reduction of brain injury due to traumatic brain injury and stroke.
In addition to increased risk of morbidity and mortality associated with epilepsy, patients face stigma placed upon them by the community. Stigmatization prevents patients from disclosing their condition and, at times, from seeking treatment. This clearly has an impact on employment, education and, ultimately, on patients quality of life and their integration in society.
Treatment with antiepileptic medication can render up to 70-80% of patients seizure-free. The most frequently prescribed antiepileptic drugs (AEDs) in the country are: carbamazepine (29%), clonazepan (22%), phenobarbital (17%), phenytoin (11%), Valproate (8%).
This project aims at testing the feasibility of diagnosing and treating epilepsy at primary care level with rational use of the first line antiepileptic drugs (phenobarbital, phenytoin, carbamazepine, and valproic acid). The long-term prospect 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.
- To generate procedures that will improve the identification and management of people with epilepsy in urban area 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.
- To assess current management practices (identification, treatment and follow-up) of patients with epilepsy in urban areas of the country.
- To estimate: a) prevalence of active forms of epilepsy, b) the scale 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.
- To ascertain the etiology and risk factors in association with epilepsy in the community.
- To reduce and eradicate preventable causes of epilepsy in the community.
- To ascertain the knowledge, attitudes and practice of epilepsy amongst health practitioners at primary health level prior to the study and after they have undergone training for epilepsy.
- To develop technical norms for identification, education, treatment and follow-up of patients with epilepsy at primary health care level.
- To carry out a feasibility study of the treatment of forms of epilepsy using first line antiepileptic drugs by primary health care physicians.
- To develop strategies for the implementation of a cost-effective surgical program for the treatment of epilepsy.
- To develop a program for continuous professional education on epilepsy for primary health workers.
- To promote public awareness about epilepsy via an educational program aimed at the community.
- To promote continuing education for primary and secondary level school teachers and diffusion of information on epilepsy.
- To develop a program to de-stigmatize epilepsy and improve its social acceptance.
- To develop local advocacy and support groups for people with epilepsy.
- To reduce the economic and social burden of epilepsy in the study areas.
This demonstration project is composed of three parts:
- Epidemiological estimation. This provides a realistic estimation of the prevalence of epilepsy and untreated active epilepsy in the study area. The epidemiological exercise aimed to estimate the prevalence of active epilepsy and the treatment gap. A door-to-door survey was carried out in the study area using the screening questionnaire based on a local modified Portuguese version of ICBERG (screening instrument). The survey was repeated using a similar methodology and instruments at the end of the four-year period to ascertain if there had been a measurable change in the treatment gap in the areas surveyed.
- Service Delivery (Intervention Study). This covered the issues of diagnosis, AED treatment, follow-up and referral networks. The target population consisted of patients with epilepsy, treated or untreated, who lived in the study area. A variety of case-finding methods was used. Identification of patients was initially carried out by health assistants, whilst local neurologists were responsible for checking the patients who had been selected and referred for complementary examinations. Identified patients were invited to participate in this study. Patients who did not wish to enrol in this study did receive medical treatment. Patients with confirmed diagnosis of epilepsy who wished to participate in this study were enrolled in the study protocol. Health assistants at the primary health centres were responsible for explaining the nature of this study, obtaining a written consent form and complete a study entry form. Physicians at the primary health centre were responsible for prescribing medication, and filling in the medical report forms.
At the end of 12 months treatment, one objective and two subjective assessments were carried out to determine the effectiveness of the treatment. In order to ensure the quality of the project, a framework for monitoring the project was devised.
The members of the Executive Committee monitored the projects progress and checked the study area every 3 months. Annual reports on the progress of the project were generated.
- Education, Social and Community Intervention.
This covered the educational and social aspects of the project. The project lasted four years. During the first year, the following activities were carried out:
- Preparation of training modules
- Design of instruments, including the screening questionnaire
- Drafting training material and work menu
- Validation of screening questionnaire
- Training of trainers
- Training of family physicians
- Door to door survey
- End of first year assessment
All physicians and nurses received basic epilepsy training. The training modules were standardized and covered the following aspects:
- Epidemiology and public health aspects of epilepsy
- Classification of seizures and epileptic syndromes
- Causes of epilepsy
- Differential diagnosis of epilepsy
- Drug treatment of epilepsy
- Management of epilepsy
- Febrile convulsion and benign childhood epilepsy syndromes
- Nature of the study and how to fill in the study forms
Each primary health care team also received a work plan. All physicians completed a questionnaire to ascertain their knowledge, attitudes and practice (KAP) in relation to epilepsy prior to the first training session. To assess the effectiveness of the training module, all participants completed the same questionnaire 3 to 6 months later.
An educational programme was directed at patients and their families. It is aimed at informing them about:
- The nature of epilepsy, its characteristics, cause and prognosis
- The nature of treatment, its objectives, the use of drugs, the importance of compliance, the potential side effects of drugs, and the duration of treatment
- General health measures and emergency treatment of seizures
The issue of stigma in epilepsy and layman perception and prejudice against patients with epilepsy was explored in different segments of society. An educational program aimed at decreasing the level of social stigma in areas of social relations, employment, leisure activities, schooling, etc, was developed. This was aimed at local primary and secondary school teachers because they exercise an important role in their communities The aim of this program was to address attitudes regarding aetiology, shame and the lack of infectiousness of epilepsy. A questionnaire on public perception of epilepsy was applied to the teachers before and after the educational program, as well to students, to assess changes. Assistance was given to create advocacy/support groups composed of local laymen and health professionals.
Organizational Context and Management Structure
This demonstration project was based on the guidelines of the Global Campaign Against Epilepsy, which was launched in 1997. Professors Li Li Min and Ley Sander were the coordinators of the project. The Department of Neurology was responsible for the work involved in the Demonstration Project. The Project was carried out in the District of Barão Geraldo in Campinas; and Districts of Santo Antonio and Jaguaré in São José do Rio Preto. The main setting of this project was based at the local primary health centres of these three Districts under Municipal Health Departments and their referral tertiary centres. Responsibility for local activities rested with the local personnel. The Project was co-ordinated by Hanneke M de Boer (ILAE/IBE) and Dr Leonid Prilipko on behalf of WHO.
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