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As part of a wider project developing a core outcome set for clinical trials for adults with epilepsy (the EPSET Project), a rapid review of the published qualitative literature was performed. MEDLINE was searched using an established qualitative methodological search filter to identify studies discussing the views of adults with epilepsy and their representatives. Eligible articles included published free\u2010text verbatim quotations from adults with epilepsy or their representatives discussing potential health outcomes. Data were coded and categorized in line with an established health outcome taxonomy. A total of 614 eligible articles were identified, of which 74 were included as they met the inclusion criteria. In total, the views of more than 2474 adults with epilepsy and 658 caregivers were included from six continents. Of the included studies, 77% used in\u2010depth interviews and 12% used focus groups. A total of 140 individual health outcomes were identified in the included studies across nine outcome domains: seizure\u2010related, cognitive\u2013behavioral\u2013neuropsychological, physical functioning\u2013disability, emotional functioning, social role functioning, global quality of life, side effects and adverse events, fertility\u2013pregnancy\u2013offspring, and death. This is the first review of qualitative studies focusing on health outcomes for adults with epilepsy. The findings confirm that living with epilepsy represents more than living with seizures and highlight the impact of neuropsychiatric symptoms in these populations. Importantly, many outcomes identified from this review are not measured and reported in studies assessing the effectiveness and safety of treatments for epilepsy, supporting the development of a lived experience\u2010informed core outcome set for future effectiveness studies. Furthermore, the findings could be used to inform clinical practice and noninterventional studies across broad geographic, societal, and cultural settings.<\/jats:p>","DOI":"10.1111\/epi.18570","type":"journal-article","created":{"date-parts":[[2025,8,6]],"date-time":"2025-08-06T16:55:28Z","timestamp":1754499328000},"page":"4122-4138","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":8,"title":["What matters most to people living with epilepsy? A rapid review of qualitative research relating to health outcomes"],"prefix":"10.1111","volume":"66","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-6465-0382","authenticated-orcid":false,"given":"James W.","family":"Mitchell","sequence":"first","affiliation":[{"name":"Institute of Systems, Molecular, and Integrative Biology University of Liverpool  The Clinical Sciences Centre, Aintree Hospital Site, Lower Lane Liverpool L9 7AL UK"},{"name":"Department of Neurology Walton Centre NHS Foundation Trust  Liverpool UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"John","family":"Doherty","sequence":"additional","affiliation":[{"name":"Department of Neurology Walton Centre NHS Foundation Trust  Liverpool UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rachel","family":"Batchelor","sequence":"additional","affiliation":[{"name":"Oxford Institute of Clinical Psychology Training and Research University of Oxford  Oxford UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8070-4352","authenticated-orcid":false,"given":"Adam","family":"Noble","sequence":"additional","affiliation":[{"name":"Department of Public Health, Policy, and Systems, Institute of Population Health, Policy, and Systems University of Liverpool  Liverpool UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anthony","family":"Marson","sequence":"additional","affiliation":[{"name":"Institute of Systems, Molecular, and Integrative Biology University of Liverpool  The Clinical Sciences Centre, Aintree Hospital Site, Lower Lane Liverpool L9 7AL UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2025,8,6]]},"reference":[{"key":"e_1_2_11_2_1","doi-asserted-by":"publisher","DOI":"10.1002\/epi4.12239"},{"key":"e_1_2_11_3_1","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.49.2.333"},{"key":"e_1_2_11_4_1","doi-asserted-by":"publisher","DOI":"10.1002\/epi4.3"},{"key":"e_1_2_11_5_1","doi-asserted-by":"publisher","DOI":"10.1080\/17512433.2017.1356720"},{"key":"e_1_2_11_6_1","unstructured":"NolanSJ SuttonL MarsonAG TudurSC.Consistency of outcome and statistical reporting of time to event data: the impact on Cochrane reviews and meta\u2010analyses in epilepsy.Conference proceedings. 21st Cochrane Colloquium Universit\u00e9 Laval Quebec City Canada 19th\u201323rd September 2013."},{"key":"e_1_2_11_7_1","doi-asserted-by":"publisher","DOI":"10.1186\/1745\u20106215\u20108\u201038"},{"key":"e_1_2_11_8_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365\u20102133.2010.10054.x"},{"key":"e_1_2_11_9_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13063\u2010017\u20101978\u20104"},{"key":"e_1_2_11_10_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jclinepi.2023.03.011"},{"key":"e_1_2_11_11_1","doi-asserted-by":"publisher","DOI":"10.1186\/1745\u20106215\u20108\u201039"},{"key":"e_1_2_11_12_1","doi-asserted-by":"publisher","DOI":"10.1111\/epi.17971"},{"key":"e_1_2_11_13_1","doi-asserted-by":"publisher","DOI":"10.1111\/epi.17976"},{"key":"e_1_2_11_14_1","doi-asserted-by":"publisher","DOI":"10.1111\/epi.14735"},{"key":"e_1_2_11_15_1","doi-asserted-by":"publisher","DOI":"10.1111\/epi.17461"},{"key":"e_1_2_11_16_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13063\u2010016\u20101356\u20107"},{"key":"e_1_2_11_17_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0172937"},{"key":"e_1_2_11_18_1","doi-asserted-by":"publisher","DOI":"10.1177\/1049732307306927"},{"key":"e_1_2_11_19_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjdrc\u20102018\u2010000615"},{"key":"e_1_2_11_20_1","doi-asserted-by":"publisher","DOI":"10.1097\/MCC.0000000000000533"},{"key":"e_1_2_11_21_1","doi-asserted-by":"publisher","DOI":"10.1111\/obr.12518"},{"key":"e_1_2_11_22_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjpo\u20102018\u2010000343"},{"key":"e_1_2_11_23_1","doi-asserted-by":"publisher","DOI":"10.1186\/1745\u20106215\u201016\u2010s1\u2010o3"},{"key":"e_1_2_11_24_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13063\u2010022\u201006729\u20104"},{"key":"e_1_2_11_25_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.eplepsyres.2024.107481"},{"key":"e_1_2_11_26_1","doi-asserted-by":"publisher","DOI":"10.1186\/1748\u20105908\u20105\u201056"},{"key":"e_1_2_11_27_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jclinepi.2019.12.008"},{"key":"e_1_2_11_28_1","doi-asserted-by":"publisher","DOI":"10.1136\/qshc.2003.008714"},{"key":"e_1_2_11_29_1","unstructured":"MitchellJW DohertyJ NobleA WilliamsonP MarsonT.A systematic review of qualitative research reporting on the perceptions of outcomes for people with epilepsy (PWE). 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