{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,24]],"date-time":"2026-09-24T04:21:05Z","timestamp":1790223665021,"version":"4.1.0"},"reference-count":44,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2026,4,15]],"date-time":"2026-04-15T00:00:00Z","timestamp":1776211200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"},{"start":{"date-parts":[[2026,4,15]],"date-time":"2026-04-15T00:00:00Z","timestamp":1776211200000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"funder":[{"DOI":"10.13039\/501100006546","name":"Angelini Pharma","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100006546","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100011096","name":"Jazz Pharmaceuticals","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100011096","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100008373","name":"Takeda Pharmaceutical Company","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100008373","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100011110","name":"UCB","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100011110","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Epilepsia Open"],"published-print":{"date-parts":[[2026,6]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>While epilepsy research has largely focused on medical management and clinical outcomes, less attention has been given to the unmet psychosocial and everyday needs of people with epilepsy (PWE), particularly in low\u2010 and middle\u2010income countries. The Global Epilepsy Needs Study (GENS) aims to explore these needs, which are integral to the quality of life, by capturing both shared and context\u2010specific experiences.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>\n                      The GENS employed a patient\u2010centered approach and mixed\u2010methods design, integrating a cross\u2010sectional survey and semi\u2010structured interviews in 15 countries. The survey, available in 12 languages, captured experiences across 10 life domains (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u20095296 participants). Interviews were analyzed thematically using a phenomenological approach and Colaizzi's method, exploring lived experiences in depth (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200975 participants). To ensure meaningful involvement and diverse representation, national patient associations, healthcare professionals, researchers, and people with lived experience guided each stage of the research process, from study design to manuscript development.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Quantitative and qualitative data were integrated using a joint display method. This analysis generated five Generalized Themes across all life domains: (1) managing uncertainty and redefining daily life; (2) living with risk, social exclusion, and misunderstanding; (3) challenges in navigating inaccessible systems; (4) consequences of inaccessible or inadequate information; and (5) complex epilepsy needs demand more than standard approaches.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Significance<\/jats:title>\n                    <jats:p>This first\u2010of\u2010its\u2010kind global study offers a comprehensive picture of the psychosocial and everyday challenges faced by PWE. It establishes a critical evidence base for epilepsy organizations, highlights the need for healthcare systems to adopt holistic, multidisciplinary approaches, and calls on policymakers to invest in systemic reforms that safeguard dignity, inclusion, and life opportunities. Future research should explore the needs of underserved groups, including caregivers, individuals with complex epilepsy, women, and those in low\u2010income or rural settings.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Plain Language Summary<\/jats:title>\n                    <jats:p>This study examined the everyday challenges faced by people with epilepsy in different parts of the world. It showed that many people struggle with fear, stigma, poor access to services, and a lack of clear information and support. Women, people in rural areas, and those in low\u2010income settings often face the greatest challenges. The study calls for better education, more support for caregivers, and improvements across health, work, school, and transport systems. It also shows the need for more research to understand and respond to the real\u2010life needs of people most impacted by epilepsy.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1002\/epi4.70237","type":"journal-article","created":{"date-parts":[[2026,4,15]],"date-time":"2026-04-15T15:29:06Z","timestamp":1776266946000},"page":"814-832","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":3,"title":["The Global Epilepsy Needs Study (\n                    <scp>GENS<\/scp>\n                    ): A mixed\u2010methods, multi\u2010country exploration of the unmet psychosocial and everyday needs of people with epilepsy"],"prefix":"10.1002","volume":"11","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-5736-605X","authenticated-orcid":false,"given":"Gus A.","family":"Baker","sequence":"first","affiliation":[{"name":"International Bureau for Epilepsy  Washington DC USA"},{"name":"Department of Molecular and Clinical Pharmacology University of Liverpool  Liverpool UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7573-6712","authenticated-orcid":false,"given":"Sandeep Kumar","family":"Bagga","sequence":"additional","affiliation":[{"name":"MediPaCe  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Donna","family":"Walsh","sequence":"additional","affiliation":[{"name":"International Bureau for Epilepsy  Washington DC USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Claire","family":"Nolan","sequence":"additional","affiliation":[{"name":"International Bureau for Epilepsy  Washington DC USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3755-5037","authenticated-orcid":false,"given":"Shivani","family":"Sharma","sequence":"additional","affiliation":[{"name":"International Bureau for Epilepsy  Washington DC USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Charlotte","family":"Hooker","sequence":"additional","affiliation":[{"name":"MediPaCe  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0006-2208-5772","authenticated-orcid":false,"given":"Pepa","family":"Gonzalez Parrao","sequence":"additional","affiliation":[{"name":"MediPaCe  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Francesca","family":"Sofia","sequence":"additional","affiliation":[{"name":"International Bureau for Epilepsy  Washington DC USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7345-4829","authenticated-orcid":false,"given":"J. 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