{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,11]],"date-time":"2026-09-11T21:25:43Z","timestamp":1789161943907,"version":"build-2803163510"},"reference-count":54,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2021,12,4]],"date-time":"2021-12-04T00:00:00Z","timestamp":1638576000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Epilepsia"],"published-print":{"date-parts":[[2022,2]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Objective<\/jats:title><jats:p>Identity is a multifaceted construct, comprising personal identity (sense of being a unique individual) and social identity (the sense\u2010of\u2010self derived from membership of social groups). Social identity involves explicit identification with a group (\u201cI am \u2026\u201d) and implicit behaviors or attitudes associated with group membership. Following successful treatment with surgery, patients with epilepsy can undergo a complex and lasting change in personal identity. To date, there has been no research into postoperative social epilepsy identity (SEI). We sought to examine SEI 15\u201320\u00a0years post\u2010surgery, and the relationship between SEI and satisfaction with surgery, psychosocial improvements, mood, and health\u2010related quality of life (HRQoL).<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Thirty\u2010two patients who underwent anterior temporal lobectomy (ATL; 19 female) were recruited, with a median follow\u2010up of 18\u00a0years (interquartile range [IQR]\u00a0=\u00a02.5). Using a novel interactive online program, we collected data on SEI, satisfaction with surgery, and perceived psychosocial improvements, alongside standardized measures of mood (Neurological Disorders Depressio Inventory\u2010Epilepsy; Patient Health Questionnaire\u2010Generalised Anxiety Disorder\u20107 item) and HRQoL (Quality of Life in Epilepsy\u201031 item). Non\u2010parametric analyses were used to analyse the data.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Twenty\u2010five percent of patients were free of disabling seizures since surgery, yet 65% stated they no longer had epilepsy and &gt;90% reported satisfaction with surgery. Explicitly discarding SEI was positively associated with HRQoL at long\u2010term follow\u2010up, over and above seizure outcome. Implicit SEI was expressed as (a) acceptance of epilepsy, (b) a sense of belonging to the epilepsy community, and (c) difficulty disclosing and discussing epilepsy. Difficulty disclosing and discussing epilepsy was associated with increased anxiety and lower HRQoL.<\/jats:p><\/jats:sec><jats:sec><jats:title>Significance<\/jats:title><jats:p>At long\u2010term follow\u2010up, over half of our patients reported an explicit change in SEI, which could promote better HRQoL. In contrast, difficulty with disclosure of epilepsy was associated with increased anxiety and reduced HRQoL, possibly reflecting the ongoing effects of stigma. These findings highlight the importance of understanding changes in patient social identity for promoting long\u2010term well\u2010being after surgery.<\/jats:p><\/jats:sec>","DOI":"10.1111\/epi.17143","type":"journal-article","created":{"date-parts":[[2021,12,4]],"date-time":"2021-12-04T12:59:07Z","timestamp":1638622747000},"page":"402-413","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":7,"title":["\u201c<i>Do I still have epilepsy?<\/i>\u201d Epilepsy identity 15\u201320 years after anterior temporal lobectomy"],"prefix":"10.1111","volume":"63","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-5532-9327","authenticated-orcid":false,"given":"Honor","family":"Coleman","sequence":"first","affiliation":[{"name":"Melbourne School of Psychological Sciences The University of Melbourne Melbourne Vic. Australia"},{"name":"Epilepsy Research Centre Department of Medicine (Austin Health) University of Melbourne Melbourne Vic. 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