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.632 B395398Fernandes, P.T., Souza, E.A., Identification of family variables in parents' groups of children with epilepsy (2001) Arq Neuropsiquiatr, 59, pp. 854-858Li, L.M., Sander, J.W., National demonstration project on epilepsy in Brazil (2003) Arq Neuropsiquiatr, 61, pp. 153-156Leidy, N.K., Rentz, A.M., Grace, E.M., Evaluating health-related quality of life outcomes in clinical trials of antiepileptic drug therapy (2004) Epilepsia, 39, pp. 965-977Baker, G.A., Brooks, J., Buck, D., Jacoby, A., The stigma of epilepsy: A European perspective (2000) Epilepsia, 41, pp. 98-104Baker, G.A., Nashef, L., Van Hout, B.A., Current issues in the management of epilepsy: The impact of frequent seizures on cost of illness, quality of life, and mortality (1997) Epilepsia, 38 (SUPPL. 1), pp. S1-S8Baker, G.A., Jacoby, A., Chadwick, D.W., The associations of psychopathology in epilepsy: A community study (1996) Epilepsy Res, 25, pp. 29-39Jacoby, A., Felt versus enacted stigma: A concept revisited. Evidence from a study of people with epilepsy in remission (1994) Soc Sci Med, 38, pp. 269-274Placencia, M., Farmer, P.J., Jumbo, L., Sander, J.W., Shorvon, S.D., Levels of stigmatization of patients with previously untreated epilepsy in northern Ecuador (1995) Neuroepidemiology, 14, pp. 147-154Ratsepp, M., Oun, A., Haldre, S., Kaasik, A.E., Felt stigma and impact of epilepsy on employment status among Estonian people: Exploratory study (2000) Seizure, 9, pp. 394-401Scambler, G., Hopkins, A., Generating a model of epileptic stigma: The role of qualitative analysis (1990) Soc Sci Med, 30, pp. 1187-1194Ryan, R., Kempner, K., Emlen, A.C., The stigma of epilepsy as a self-concept (1980) Epilepsia, 21, pp. 433-444Fernandes, P.T., Salgado, P.C., Ala, N., Barbosa, F.D., Souza, E.A., Li, L.M., Stigma Scale of Epilepsy: Conceptual issues (2004) J Epilep Clin Neuropshysiology, 10, pp. 213-218McLin, W.M., De Boer, H.M., Public perceptions about epilepsy (1995) Epilepsia, 36, pp. 957-95
