Agradecimentos: Churl-Su Kwon is funded by the Leon Levy Fellowship. J. Helen Cross holds the Prince of Wales’s Chair of Childhood Epilepsy and is supported by the National Institute for Health Research Biomedical Research Centre at Great Ormond Street Hospital for Children NHS Foundation Trust and University College London. Solomon L. Moshé is the Charles Frost Chair in Neurosurgery and Neurology. Samuel Wiebe holds the Hopewell Professorship in Clinical Neuroscience from the Cumming School of Medicine at the University of Calgary. Nathalie Jetté is the holder of the Bludhorn Professor of International Medicine. Ann Jacoby is Professor Emerita at the University of Liverpool, UK. Funding for this study was in part provided by the International League Against Epilepsy. Nathalie Jetté receives grant funding paid to her institution for grants unrelated to this work from the National Institute of Neurological Disorders and Stroke (NINDS) (National Institutes of Health (NIH) U24NS107201, NIH IU54NS100064), the American Epilepsy Society and the NORSE Institute. She receives an honorarium for her work as an Associate Editor of Epilepsia. Gretchen Birbeck has received funds from the US NIH to conduct work on epilepsy-associated stigma. She is the curator for Neurology: Without Borders and serves on the Advisory Board for the US NIH’s Fogarty International Center. J Helen Cross holds research grants from National Institute for Health Research, European Union, Action Medical Research, SPARKS, Epilepsy Action, and the Charles Wolfson Foundation. She is Chief or Principal Investigator for clinical trials for GW Pharma and Zogenix, and has sat on advisory boards for Nutricia, Vitaflo, Eisai, Takeda, Shire, and GSK for which remuneration has been made to her department. Solomon L. Moshé is funded by grants from NIH NS43209 and 1U54NS100064, CURE Infantile Spasms Initiative, US Department of Defense (W81XWH-13–1–0180), the Heffer Family and the Segal Family Foundations, and the Abbe Goldstein/Joshua Lurie and Laurie Marsh/Dan Levitz families. He also serves as an Associate Editor of Neurobiology of Disease, and is on the editorial boards of Epileptic Disorders, Brain and Development, Pediatric Neurology, and Physiological Research. He receives from Elsevier an annual compensation for his work as Associate Editor of Neurobiology of Disease and royalties from two books he co-edited. None of the other authors have any conflicts of interest to disclose. We confirm that we have read the Journal's position on issues involved in ethical publication and affirm that this report is consistent with those guidelines Ver menos

Abstract: This is a systematic review aimed at summarizing the evidence related to instruments that have been developed to measure stigma or attitudes toward epilepsy and on stigma-reducing interventions. This review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) standards. A broad literature search (1985-2019) was performed in 13 databases. Articles were included if they described the development and testing of psychometric properties of an epilepsy-related stigma or attitude scale or stigma-reducing interventions. Two reviewers independently screened abstracts, reviewed full-text articles, and extracted data. Basic descriptive statistics are reported. We identified 4234 abstracts, of which 893 were reviewed as full-text articles. Of these, 38 met inclusion criteria for an instrument development study and 30 as a stigma-reduction intervention study. Most instruments were initially developed using well-established methods and were tested in relatively large samples. Most intervention studies involved educational programs for adults with pre- and post-evaluations of attitudes toward people with epilepsy. Intervention studies often failed to use standardized instruments to quantify stigmatizing attitudes, were generally underpowered, and often found no evidence of benefit or the benefit was not sustained. Six intervention studies with stigma as the primary outcome had fewer design flaws and showed benefit. Very few or no instruments were validated for regional languages or culture, and there were very few interventions tested in some regions. Investigators in regions without instruments should consider translating and further developing existing instruments rather than initiating the development of new instruments. Very few stigma-reduction intervention studies for epilepsy have been conducted, study methodology in general was poor, and standardized instruments were rarely used to measure outcomes. To accelerate the development of effective epilepsy stigma-reduction interventions, a paradigm shift from disease-specific, siloed trials to collaborative, cross-disciplinary platforms based upon unified theories of stigma transcending individual conditions will be needed Ver menos