National epilepsy movement in Brazil

Purpose: To establish a social network of epilepsy lay organization in Brazil to provide advocacy for people with epilepsy and eventually forma powerful National Epilepsy movement. Method.-We actively searched for any associations, support groups or organizations related to epilepsy in the country by personal contacts, internet search and by telephone search. Contact was then established with any entity found. Results: The first meeting was held in Campinas in March 2003, and was attended by 270 people, including many people with epilepsy, members of all eleven epilepsy associations found, health professionals and representatives of the Brazilian chapters of IBE and ILAE and the Brazilian Ministry of Health. This first meeting resulted in a National Movement expressed every year through the National Week of Epilepsy and National Meeting of Lay Associations. Discussion: This strategy, developed by ASPE, was simple and effective, and in a very short time a national movement was active. These actions could be reproduced in any country developing a campaign against epilepsy. it is important to consider that this is a process of empowerment, thus people with epilepsy need to take actions into their own hands and to be active participants

Stigma and attitudes on epilepsy - A study with secondary school students

Purpose: To evaluate whether an inappropriate attitude towards a person having an epileptic seizure contributes to the stigma found in society and whether an appropriate attitude helps to diminish it in the short term; to perform a long term investigation about information remembered and stigma perception after an educational lecture. Method. This study was performed in two steps: Step 1. students of first year of high school of two schools in Campinas completed a questionnaire including the Stigma Scale of Epilepsy following a seizure demonstration. They were divided into three groups: a) one group had a demonstration of proper attitudes towards someone having an epileptic seizure; b) one group was shown incorrect procedures; c) control group. After the completion of the questionnaire, an educational lecture about epilepsy was given. Step 2: six months later, the questionnaire was re-administered. Results: The comparison between the four groups (step 1 and step 2) show a significant difference (Anova (3,339)=2.77; p=0.042). Pairwise comparison using Fisher's Least-Significant-Difference Test showed a significant difference between the group shown incorrect procedures (step 1) versus step 2, and the control group (step 1) versus step 2, but no difference between the group shown correct procedures (step 1) versus step 2. Discussion: Exhibiting proper attitudes towards a person experiencing an epileptic seizure may cause significant differences among the subjects' degrees of stigma towards people with epilepsy. It is therefore fundamental that there should be de-stigmatization campaigns provided, to correct information and provide appropriate education

Allergic skin rash with lamotrigine and concomitant valproate therapy - Evidence for an increased risk

Cutaneous rash is one of the commonest adverse events associated with lamotrigine. We assessed whether the risk is increased in patients receiving concomitant valproate therapy in a population of 103 adult patients with intractable epilepsy, who had lamotrigine added to their treatment. Of the 33 patients taking valproate, 10 (30%) developed a rash, whilst of the 70 not taking valproate, only 6 (8%) developed a rash. This suggests a significantly higher risk of cutaneous rash when starting lamotrigine in patients already taking valproate (p<0.02)

Stigma scale of epilepsy - Validation process

Purpose: To validate a Stigma Scale of Epilepsy (SSE). Methods: The SSE was completed by 40 adult with epilepsy attending an Outpatient Epilepsy Clinic at the University Hospital of UNICAMP, and by 40 people from the community. People were interviewed on an individual basis; a psychologist read the questions to the subjects who wrote the answers in a sheet. The procedure was the same for all the subjects and completion took around ten minutes. Results: The SSE has 24 items. The internal consistency of the SSE showed alpha. Cronbach's coefficient 0.88 for the patients with epilepsy and 0.81 for the community. The overall mean scores of the Stigma Scale of Epilepsy formula were: 46 (SD=18.22) for patients and 49 (SD=13.25) for the community where a score of 0 would suggest no stigma, and 100 maximum stigma. Discussion: The SSE has satisfactory content validity and high internal consistency. It allows the quantification of the perception of stigma by patients and people from community; this can then be used for interventional studies, such as mass media campaign in minimizing the negative facets of stigma

Demonstration project on epilepsy in Brazil - WHO/ILAE/IBE Global Campaign Against Epilepsy - A foreword

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 families5-9. The project in Brazil has targeted areas in Campinas and São José do Rio Preto municipalities, both in São Paulo State, in Southeastern region8. 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 4-5th 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 9th (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

Training medical students to improve the management of people with epilepsy

Purpose: To evaluate the knowledge, attitude and perception of medical students prior to and after a training course about epilepsy. Methods: We used a KAP questionnaire with sixty-one questions which assesses knowledge, attitude and practice of epilepsy. Questionnaires were completed by 185 medical students, before and after epilepsy training. We compared the answers to see whether the lecture had changed the knowledge, attitude and practice in epilepsy. Results: One hundred and six students completed the questionnaire before an eight hour course on epilepsy and 79 students completed the questionnaire one year after the course. Comparison of the knowledge scores prior to (mean=53.9, standard deviation=11.4) and after the course (mean=63.8, standard deviation=11.9) showed that students had improved knowledge after the course (t-test=5.6, p < 0.001). Discussion: Training course on epilepsy for medical students can promote improvement in the knowledge, attitudes and perception regarding epilepsy, which is maintained one year later. These results highlight the importance of continuous educational programs within the Medical Curriculum

Retinal nerve fibre layer thinning is associated with drug resistance in epilepsy.

Retinal nerve fibre layer (RNFL) thickness is related to the axonal anterior visual pathway and is considered a marker of overall white matter 'integrity'. We hypothesised that RNFL changes would occur in people with epilepsy, independently of vigabatrin exposure, and be related to clinical characteristics of epilepsy

Island, pit, and groove formation in strained heteroepitaxy

2005-2006 > Academic research: refereed > Publication in refereed journalVersion of RecordPublishe

Demonstration project on epilepsy in Brazil - Outcome assessment

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 patient's and the physician's point of view, 3) reduction of absenteeism, 4) social integration (school and work), and 5) sense of independence. Results: A total of 181 patients (93 women - 51%) with a mean age of 38 (range from 2 to 86) years were studied. The mean follow-up was 26 months (range from 1 to 38 months, 11 patients had follow-up of less than 12 months). Seizure frequency was assessed based on a score system, ranging 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

Stigma scale of epilepsy - The perception of epilepsy stigma in different cities in Brazil

Purpose: To assess the perception of epilepsy stigma in different regions of Brazil. Method: The Stigma Scale of Epilepsy (SSE) questionnaire was applied to people in different Brazilian urban settings. The survey was performed on individual basis; an interviewer read the questions to the subjects and wrote down the answers. The same procedure was applied to all the subjects and took around 10 minutes. Results: 266 questionnaires were completed in four different towns of Brazil (Curitiba=83; Sao Paulo=47; Vila Velha=79; Ipatinga=57). The overall stigma score was 49.7 (median). Different scores were obtained in each locality. Vila Velha=42; Curitiba=49; Sao Paulo=52; Ipatinga=54 (ANOVA [2.262]=3.82; p=0.01). Conclusion: This study showed differences in the perception of stigma, which may depend on cultural and regional aspects. The concept of stigma has cultural perspectives, depending on the region and the context where each person lives. The understanding of this aspect of epilepsy is important to promote better de-stigmatization campaigns, considering the cultural and social differences