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

Qualidade de vida de crianças e adolescentes: uma revisão bibliográfica

O presente artigo tem como objetivo analisar as produções científicas nacionais, que abordam a temática da qualidade de vida ligada à saúde da criança e do adolescente. As bases de dados consultadas foram a SciELO e Bireme totalizando 30 artigos publicados no período de 1990 a 2008. Revelou-se uma predominância da abordagem quantitativa (70%) e um alto índice de aplicações de instrumentos de avaliações de qualidade de vida ligada à saúde (66,7%) e genéricos (28,6%). O conceito de qualidade de vida foi usado em duas vertentes: no contexto da pesquisa científica e como parte dos resultados desejados das práticas assistenciais e políticas públicas. O referido construto é apresentado através de uma perspectiva multidimensional, incluindo no mínimo as dimensões física, psicológica e social e de uma perspectiva subjetiva, o que implica no pressuposto de que a própria pessoa deve avaliar sua qualidade de vida. Observou-se ainda um movimento de valorização da perspectiva da criança e do adolescente como relator de sua experiência de vida. Conclui-se pela necessidade de criação e utilização de instrumentos de avaliação de qualidade de vida que valorizem a perspectiva de crianças e adolescentes e adequados a sua fase de desenvolvimento. A avaliação de qualidade de vida deve ser incorporada à avaliação clínica uma vez que a doença crônica repercute nas diversas dimensões da vida dos mesmos.The scope of this article was to analyze Brazilian scientific articles that assess the quality of life related to the health of children and adolescents. The databases consulted were SciELO and Bireme involving a total of 30 articles published between 1990 and 2008. The articles confirmed the predominance of quantitative methodologies (70%) with a high incidence of applications of HRQL (66.7%) and generic texts (28.6%). The concept of quality of life was evaluated from two standpoints: in the context of scientific research and as part of the desired results of healthcare and public policy. This construct is presented from a multidimensional perspective, embracing the social, psychological, physical and individual dimensions, which is based on the premise that the individuals themselves must assess their own quality of life. The article draws attention to the need to create and use instruments of quality of life for children and adolescents that enhance their perspective about their health processes using appropriate tools for each phase of development. The assessment of quality of life should be incorporated in clinical assessment since chronic illness has repercussions in the many dimensions of the life

Pre-surgery expectations and post-surgery life-changing validation process

This study aimed to validate two instruments that evaluate presurgery expectations and post-surgery life changes of people with epilepsy. The expectations questionnaire comprises 18 yes/no questions and the life changes questionnaire 25 yes/no questions, which includes the 18 questions of the expectations questionnaire plus seven negative questions, considering that the Surgery could have a negative effect on the patient quality of life. There were also questions asking the patients to state if they consider the Surgery to be a success or a failure, and about the frequency of seizures and their intensity. Patients were interviewed in three different phases: pre-surgery, post-surgery I (six months after surgery) and post-surgery 2 (12 months after Surgery). The internal consistency of the instruments showed a general Kuder-Richardson coefficient of 0.855 (pre-surgergy), 0.833 (post-surgery 1), 0.756 (post-surgery 2), showing that both instruments have a satisfactory content validity and high internal consistency. In this context, the answers obtained in this Study are important because they represent the development of a complete set of categorical instruments to evaluate pre-surgery epilepsy expectations and post-surgery life changes.10429029

Prejudice towards chronic diseases: Comparison among epilepsy, AIDS and diabetes

Introduction: Diseases have an additional negative meaning but with different magnitude. Epilepsy is considered a stigmatizing condition; however its magnitude is unknown in our society, a limited-resource country, as Brazil. Purpose: To compare the stigma perception of epilepsy to other two chronic conditions: AIDS and diabetes in the city of Campinas, Brazil. Methods: We interviewed people in two situations: on the streets (145 randomly selected people) and during a Meeting of Epilepsy (86 people). We asked three questions 'What score would you rate for the prejudice that general population has towards: epilepsy, AIDS and diabetes'. The score ranges from 0 (no prejudice) to 10 (maximum prejudice), and was displayed to the interviewee in the format of a ruler. Results: The median (upper and lower 95% confidence interval) prejudice score of lay people was 9 (7.8-8.6) for AIDS, 7 (6.1-7.0) for epilepsy and 2 (2.5-3.5) for diabetes. The median prejudice score of people with epilepsy and relatives was 9 (6.9-8.1) for AIDS, 7 (6.4-7.5) for epilepsy and 2.5 (2.9-4.2) for diabetes. Discussion: There is a difference in the perception of prejudice towards people with chronic diseases; AIDS had the highest level of stigma and diabetes the lowest, and epilepsy was in the intermediate position but closer to AIDS. (c) 2007 British Epilepsy Association. Published by Elsevier Ltd. All rights reserved.16432032

Fibroblast sources: Where can we get them?

Fibroblasts are cells widely used in cell culture, both for transient primary cell culture or permanent as transformed cell lines. Lately, fibroblasts become cell sources for use in disease modeling after cell reprogramming because it is easily accessible in the body. Fibroblasts in patients will maintain all genetic background during reprogramming into induced pluripotent stem cells. In spite of their large use, fibroblasts are obtained after an invasive procedure, a superficial punch skin biopsy, collected under patient's local anesthesia. Taking into consideration the minimum patient's discomfort during and after the biopsy procedure, as well as the aesthetics aspect, it is essential to reflect on the best site of the body for the biopsy procedure combined with the success of getting robust fibroblast cultures in the lab. For this purpose, we compared the efficiency of four biopsy sites of the body (skin from eyelid, back of the ear, abdominal cesarean scar and groin). Cell proliferation assays and viability after cryopreservation were measured. Our results revealed that scar tissue provided fibroblasts with higher proliferative rates. Also, fibroblasts from scar tissues presented a higher viability after the thawing process

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; SID, 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. (c) 2007 Elsevier Inc. All rights reserved.111253