Ana L.A. Noronha

Prevalence and Pattern of Epilepsy Treatment in Different Socioeconomic Classes in Brazil

Summary:  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.

Efficacy of clobazam as add-on therapy in patients with refractory partial epilepsy.

Summary:  Purpose: Clobazam (CLB) has an important antiepileptic effect and is less expensive than the new antiepileptic drugs (AEDs), but still has not been considered as first‐line drug in the treatment of epilepsy. We evaluated the efficacy of CLB as add‐on therapy in patients with refractory partial epilepsy.

Epilepsy stigma perception in an urban area of a limited-resource country

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.

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 Cronbachs 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.

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; São 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; São 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.

Kids’ perception about epilepsy

PURPOSE Epilepsy remains a stigmatized condition. Lack of information has been pointed to as a cause of the perpetuation of stigma. Our goal was to survey childrens perception of epilepsy. METHODS We used a questionnaire to determine if the children knew what epilepsy is and, if they did not know, what did they think epilepsy is. Twenty-nine children (15 girls; mean age 10 years, range 9-11 years) from a fourth-grade class of an elementary school in Campinas, Sao Paulo, Brazil, completed the questionnaires individually at the same time in the classroom. This took about 20 minutes. RESULTS Only four children said they knew what epilepsy is: a disease of swallowing the tongue (3) and a disease that can kill (1). The perceptions of children who said they did not know what epilepsy is were: a disease that can kill, a disease of swallowing the tongue, a contagious disease, a serious illness, a head injury. Three children knew someone with epilepsy, and only two of them had said they knew what epilepsy is. CONCLUSION The perceptions elicited from the children had a negative connotation; only one child mentioned a relationship between epilepsy and the brain. The spontaneous thoughts of children in this age group, without the contamination of political correctness, may reflect societys collective unconsciousness of the prejudice toward epilepsy and people with epilepsy and needs to be further investigated. Continuous, repetitive educational efforts are necessary in elementary school to change these negative perceptions of epilepsy in our society.

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 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.

The second step in the construction of a stigma scale of epilepsy

RATIONALE The issue of stigmatization is one of the most common psychosocial problems faced by people with epilepsy. PURPOSE A second step towards the development of a scale to measure epilepsy stigma. METHOD We applied a closed questionnaire to 12 patients and 32 relatives from the Epilepsy Outpatient Clinic at the University Hospital of Campinas. RESULTS The results are grouped in three main domains: medical, social and personal areas. Medical: the subjects did not know exactly what epilepsy is or how it is caused; nonetheless they know how to treat it. Social: the most important areas that people with epilepsy are discriminated are at work and social relationships. Patients also complained about their lack of freedom and limits on recreation activities. Personal Area: subjects apparently have the same feelings and thoughts about epilepsy and seizures. CONCLUSION This study analyzed the most common aspects presented in the questionnaire to assess epilepsy stigma for the Brazilian culture which are the base to the elaboration of a stigma scale of epilepsy.

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.

Assessment of the epilepsy treatment gap in two cities of south-east of Brazil.

OBJECTIVE To assess the epilepsy treatment gap in Campinas and São Josédo Rio Preto, two cities in the State of São Paulo, Brazil. METHOD The treatment gap was estimated using the formula n1-n2/n1x100, where n1 was calculated using 1.86% prevalence and represented the number of individuals with epilepsy, while n2 represented the number of people who could be treated with an adult standard dose for a year utilizing the antiepileptic drugs supplied by the public health system. RESULTS Our estimates revealed that in 2001, approximately 50% of the population with epilepsy was treated with the recommended antiepileptic medication. CONCLUSION These results suggest that a relevant percentage of patients with epilepsy are not untreated. Further epidemiological studies are needed to investigate the reasons for this treatment gap so that interventions can reduce this gap and improve the quality of life of patients with epilepsy.