{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,9]],"date-time":"2026-07-09T11:38:17Z","timestamp":1783597097871,"version":"3.55.0"},"reference-count":30,"publisher":"Frontiers Media SA","license":[{"start":{"date-parts":[[2021,12,8]],"date-time":"2021-12-08T00:00:00Z","timestamp":1638921600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["frontiersin.org"],"crossmark-restriction":true},"short-container-title":["Front. Neurol."],"abstract":"<jats:p><jats:bold>Background:<\/jats:bold> Surgical resection is frequently the recommended treatment for drug-resistant temporal lobe epilepsy (TLE), yet many factors play a role in patients' perceptions of brain surgery that ultimately impact decision-making. The purpose of the current study was to explore how people with epilepsy, in their own words, experienced the overall process of consenting to surgery for drug-resistant TLE.<\/jats:p><jats:p><jats:bold>Methods and Materials:<\/jats:bold> Data was drawn from in-person, semi-structured interviews of 19 adults with drug-resistant TLE eligible to undergo epilepsy surgery. A systematic thematic analysis was performed to code, sort and compare participant responses. The mean age of these 12 (63%) women and seven (37%) men was 37.6 years (18\u201368 years), with average duration of epilepsy of 13 years (2\u201330 years).<\/jats:p><jats:p><jats:bold>Results:<\/jats:bold> Meeting the neurosurgeon and consenting to surgery represented an important treatment milestone across a prolonged treatment trajectory. Four themes were identified: (1) Understanding the language of risk; (2) Overcoming risk; (3) Family-centered, shared decision-making, and (4) Building decisional-confidence.<\/jats:p><jats:p><jats:bold>Conclusion:<\/jats:bold> Despite living with the restrictions of chronic uncontrolled seizures, considering an elective brain procedure raised unique and complex questions. Personal beliefs and expectations related to treatment outcomes influenced how the consent process was ultimately experienced. Decisions to pursue surgery had frequently been made ahead of meeting the surgeon, with many describing the act of signing as personally empowering. Overall, satisfaction was expressed with the information provided during the surgical visit, despite later inaccurate recall of the facts. These findings support the resultant recommendation that the practice of informed consent be conceptualized as a systematic, structured interdisciplinary process which occurs over time and encompasses three stages: preparation, signing and follow-up after signing.<\/jats:p>","DOI":"10.3389\/fneur.2021.780306","type":"journal-article","created":{"date-parts":[[2021,12,8]],"date-time":"2021-12-08T06:27:02Z","timestamp":1638944822000},"update-policy":"https:\/\/doi.org\/10.3389\/crossmark-policy","source":"Crossref","is-referenced-by-count":5,"title":["Surgical Decision-Making for Temporal Lobe Epilepsy: Patient Experiences of the Informed Consent Process"],"prefix":"10.3389","volume":"12","author":[{"given":"Sandra R.","family":"Dewar","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Huibrie C.","family":"Pieters","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Itzhak","family":"Fried","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1965","published-online":{"date-parts":[[2021,12,8]]},"reference":[{"key":"B1","doi-asserted-by":"publisher","first-page":"311","DOI":"10.1056\/NEJM200108023450501","article-title":"Effectiveness Efficiency of Surgery for Temporal Lobe Epilepsy Study Group. A randomized, controlled trial of surgery for temporal-lobe epilepsy","volume":"345","author":"Wiebe","year":"2001","journal-title":"New England J Med."},{"key":"B2","doi-asserted-by":"publisher","first-page":"922","DOI":"10.1001\/jama.2012.220","article-title":"Early surgical therapy for drug-resistant temporal lobe epilepsy: a randomized trial","volume":"307","author":"Engel","year":"2012","journal-title":"J Am Med Assoc."},{"key":"B3","doi-asserted-by":"publisher","first-page":"1742395320968622","DOI":"10.1177\/1742395320968622","article-title":"Surgical decision-making among patients with uncontrolled epilepsy: Making important decisions about my brain, which I happen to love","volume":"2020","author":"Pieters","year":"2020","journal-title":"Chronic illness"},{"key":"B4","doi-asserted-by":"publisher","first-page":"309284","DOI":"10.1155\/2013\/309284","article-title":"Epilepsy surgery: factors that affect patient decision-making in choosing or deferring a procedure","volume":"2013","author":"Anderson","year":"2013","journal-title":"Epilepsy Res Treat."},{"key":"B5","doi-asserted-by":"publisher","first-page":"352","DOI":"10.1016\/j.yebeh.2012.04.126","article-title":"Acceptance of epilepsy surgery among adults with epilepsy\u2013what do patients think?","volume":"24","author":"Erba","year":"2012","journal-title":"Epilepsy & behavior: E&B."},{"key":"B6","doi-asserted-by":"publisher","first-page":"840","DOI":"10.1111\/epi.12161","article-title":"Complications of epilepsy surgery\u2014a systematic review of focal surgical resections and invasive EEG monitoring","volume":"54","author":"Hader","year":"2013","journal-title":"Epilepsia."},{"key":"B7","doi-asserted-by":"publisher","first-page":"198","DOI":"10.5698\/1535-7597-13.5.198","article-title":"Why is there still doubt to cut it out?","volume":"13","author":"Engel","year":"2013","journal-title":"Epilepsy currents."},{"key":"B8","doi-asserted-by":"publisher","first-page":"1322","DOI":"10.1136\/jnnp-2016-313831","article-title":"Trends in epilepsy surgery: stable surgical numbers despite increasing presurgical volumes","volume":"87","author":"Cloppenborg","year":"2016","journal-title":"J Neurol Neurosurg Psychiatry."},{"key":"B9","doi-asserted-by":"publisher","first-page":"321","DOI":"10.1080\/01947649009510831","article-title":"Informed consent does not mean rational consent: cognitive limitations on decision-making","volume":"11","author":"Merz","year":"1990","journal-title":"J Leg Med."},{"key":"B10","first-page":"17","article-title":"Understanding informed consent","volume":"40","author":"Corcoran","year":"2015","journal-title":"Insight."},{"key":"B11","doi-asserted-by":"publisher","first-page":"411","DOI":"10.1111\/bju.15167","article-title":"The meaning of words\u2013closing the gap in understanding between doctors and patients in 21st century consent","volume":"126","author":"Parkinson","year":"2020","journal-title":"BJU Int."},{"key":"B12","doi-asserted-by":"crossref","DOI":"10.1212\/CPJ.0000000000000823","volume-title":"On shared decision-making and informed consent","author":"Bernat","year":"2021"},{"key":"B13","doi-asserted-by":"publisher","first-page":"i14","DOI":"10.1136\/qhc.0100014","article-title":"The extent of patients' understanding of the risk of treatments","volume":"10","author":"Lloyd","year":"2001","journal-title":"Quality Health Care: QHC."},{"key":"B14","doi-asserted-by":"publisher","first-page":"269","DOI":"10.1016\/j.yebeh.2017.08.003","article-title":"Red flags in epilepsy surgery: identifying the patients who pay a high cognitive price for an unsuccessful surgical outcome","volume":"78","author":"Baxendale","year":"2018","journal-title":"Epilepsy Behav."},{"key":"B15","doi-asserted-by":"publisher","first-page":"649","DOI":"10.1136\/jnnp.70.5.649","article-title":"The burden of normality: Concepts of adjustment after surgery for seizures","volume":"70","author":"Wilson","year":"2001","journal-title":"J Neurol Neurosurg Psychiatry."},{"key":"B16","doi-asserted-by":"publisher","first-page":"13","DOI":"10.1111\/j.1528-1167.2007.01393.x","article-title":"The burden of normality: a framework for rehabilitation after epilepsy surgery","volume":"48","author":"Wilson","year":"2007","journal-title":"Epilepsia."},{"key":"B17","doi-asserted-by":"publisher","first-page":"171","DOI":"10.1016\/j.yebeh.2014.12.027","article-title":"Perceptions of epilepsy surgery: a systematic review and an explanatory model of decision-making","volume":"44","author":"Dewar","year":"2015","journal-title":"Epilepsy Behavior."},{"key":"B18","doi-asserted-by":"publisher","first-page":"1018","DOI":"10.1111\/j.1528-1167.2011.03020.x","article-title":"Preference-based quality-of-life measures for neocortical epilepsy surgery","volume":"52","author":"Knowlton","year":"2011","journal-title":"Epilepsia."},{"key":"B19","doi-asserted-by":"publisher","first-page":"97","DOI":"10.17533\/udea.iee.v32n1a11","article-title":"Perception of the informed consent form by participants in clinical trials","volume":"32","author":"Meneguin","year":"2014","journal-title":"Investigaci\u00f3n y Educaci\u00f3n en Enfermer"},{"key":"B20","doi-asserted-by":"publisher","first-page":"763","DOI":"10.1016\/j.aorn.2010.11.039","article-title":"Informed consent: a study of the OR consenting process in New Zealand","volume":"95","author":"Agnew","year":"2012","journal-title":"AORN J."},{"key":"B21","doi-asserted-by":"publisher","first-page":"207","DOI":"10.1111\/ans.12555","article-title":"Patients' recollection and understanding of informed consent: a literature review","volume":"84","author":"Sherlock","year":"2014","journal-title":"ANZ J Surg."},{"key":"B22","doi-asserted-by":"publisher","first-page":"27","DOI":"10.1080\/15265161.2019.1587549","article-title":"Informed consent requires understanding: complete disclosure is not enough","volume":"19","author":"Pope","year":"2019","journal-title":"Am J Bioeth."},{"key":"B23","doi-asserted-by":"publisher","first-page":"187","DOI":"10.1097\/WCO.0b013e328350baa6","article-title":"Epilepsy surgery utilization: who, when, where, and why?","volume":"25","author":"Wiebe","year":"2012","journal-title":"Curr Opin Neurol."},{"key":"B24","doi-asserted-by":"publisher","first-page":"2483","DOI":"10.1212\/WNL.0000000000003407","article-title":"What can we do for people with drug-resistant epilepsy? The 2016 Wartenberg Lecture","volume":"87","author":"Engel","year":"2016","journal-title":"Neurology."},{"key":"B25","volume-title":"Constructing Grounded Theory","author":"Charmaz","year":"2014"},{"key":"B26","doi-asserted-by":"publisher","first-page":"77","DOI":"10.1191\/1478088706qp063oa","article-title":"Using thematic analysis in psychology","volume":"3","author":"Braun","year":"2006","journal-title":"Qual Res Psychol."},{"key":"B27","volume-title":"Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory","author":"Corbin","year":"2015"},{"key":"B28","volume-title":"ATLAS.ti","author":"Muhr","year":"2017"},{"key":"B29","doi-asserted-by":"publisher","first-page":"1211","DOI":"10.1007\/s00701-021-04749-8","article-title":"Neurosurgery as a window to the human mind: free will and the sense of self","volume":"163","author":"Fried","year":"2021","journal-title":"Acta Neurochir (Wien)."},{"key":"B30","doi-asserted-by":"publisher","first-page":"13","DOI":"10.1016\/j.yebeh.2003.11.013","article-title":"Paradoxical results in the cure of chronic illness: the burden of normality as exemplified following seizure surgery","volume":"5","author":"Wilson","year":"2004","journal-title":"Epilepsy & behavior: E&B."}],"container-title":["Frontiers in Neurology"],"original-title":[],"link":[{"URL":"https:\/\/www.frontiersin.org\/articles\/10.3389\/fneur.2021.780306\/full","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2021,12,8]],"date-time":"2021-12-08T06:27:13Z","timestamp":1638944833000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.frontiersin.org\/articles\/10.3389\/fneur.2021.780306\/full"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2021,12,8]]},"references-count":30,"alternative-id":["10.3389\/fneur.2021.780306"],"URL":"https:\/\/doi.org\/10.3389\/fneur.2021.780306","relation":{},"ISSN":["1664-2295"],"issn-type":[{"value":"1664-2295","type":"electronic"}],"subject":[],"published":{"date-parts":[[2021,12,8]]},"article-number":"780306"}}