{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,25]],"date-time":"2026-09-25T16:07:06Z","timestamp":1790352426411,"version":"4.1.0"},"reference-count":34,"publisher":"Wiley","license":[{"start":{"date-parts":[[2026,9,25]],"date-time":"2026-09-25T00:00:00Z","timestamp":1790294400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"},{"start":{"date-parts":[[2026,9,25]],"date-time":"2026-09-25T00:00:00Z","timestamp":1790294400000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"funder":[{"DOI":"10.13039\/100011110","name":"UCB","doi-asserted-by":"publisher","award":["UCB IIS\u20102024\u2010600503"],"award-info":[{"award-number":["UCB IIS\u20102024\u2010600503"]}],"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"],"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>Sudden Unexpected Death in Epilepsy (SUDEP) is the leading cause of epilepsy\u2010related mortality, particularly in individuals with Developmental and Epileptic Encephalopathies (DEEs). The goal of this work is to assess SUDEP\u2010related knowledge, information practices, emotional and psychological impact, and the use of preventive measures among caregivers of individuals with DEEs across different countries.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>An international, cross\u2010sectional observational study was conducted using a structured, anonymous online questionnaire translated into 16 languages. The survey assessed SUDEP\u2010related knowledge, emotional and psychological impact, access to information and support, and adopted preventive measures among caregivers of individuals with DEEs. A total of 615 responses were collected from 34 countries. Descriptive and inferential statistical analyses were performed.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Over half of caregivers (55%) reported never receiving SUDEP information from healthcare professionals, with significant cross\u2010country disparities in the timing and quality of communication among those who did. The median delay between seizure onset and SUDEP information disclosure was nearly six years. SUDEP risk was associated with substantial emotional burden, including anxiety, sleep disturbances, and concern during febrile episodes or periods of increased seizure frequency. Single caregivers reported significantly higher family impact scores. Only 8.8% of respondents had received psychological support, despite widespread emotional distress. Preventive measures were adopted by 56.6% of families, though 74.1% considered available options inadequate. Financial support for these measures varied significantly across countries.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Significance<\/jats:title>\n                    <jats:p>This study highlights critical gaps in SUDEP communication, psychological support, and access to preventive care for families affected by DEEs. By centering caregiver perspectives, our findings support the need for earlier, clearer, and repeated SUDEP communication, alongside equitable access to psychosocial support and preventive measures. Structured, system\u2010level approaches and international collaboration are essential to reduce caregiver burden and improve SUDEP\u2010related care globally.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Plain\u2010Language Summary<\/jats:title>\n                    <jats:p>We surveyed 615 caregivers of people with developmental and epileptic encephalopathies from 34 countries to understand their experiences with information about sudden unexpected death in epilepsy (SUDEP). More than half had never received SUDEP information from a healthcare professional, and many reported anxiety, sleep disruption, and significant emotional burden related to SUDEP risk. Despite these challenges, caregivers wanted clear information about SUDEP and often adopted preventive measures. Improving communication, psychological support, and access to preventive resources may help families better cope with SUDEP\u2010related concerns.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1002\/epi4.70353","type":"journal-article","created":{"date-parts":[[2026,9,25]],"date-time":"2026-09-25T15:40:53Z","timestamp":1790350853000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Silence around\n                    <scp>SUDEP<\/scp>\n                    and its impact on caregivers of individuals with developmental and epileptic encephalopathies: An international survey"],"prefix":"10.1002","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-7779-7626","authenticated-orcid":false,"given":"Jos\u00e9 \u00c1ngel","family":"Aibar","sequence":"first","affiliation":[{"name":"Dravet Syndrome Foundation Spain  Madrid Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0003-3387-218X","authenticated-orcid":false,"given":"Ana Cant\u00f3","family":"Mart\u00ednez","sequence":"additional","affiliation":[{"name":"Dravet Syndrome Foundation Spain  Madrid Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6280-2805","authenticated-orcid":false,"given":"David Alarc\u00f3n","family":"Alarc\u00f3n","sequence":"additional","affiliation":[{"name":"Dravet Syndrome Foundation Spain  Madrid Spain"},{"name":"Department of Biomedical Sciences Universidad Cardenal Herrera\u2010CEU, CEU Universities  Elche Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6171-0282","authenticated-orcid":false,"given":"Eulalia","family":"Tur\u00f3n\u2010Vi\u00f1as","sequence":"additional","affiliation":[{"name":"Hospital de la Santa Creu i Sant Pau IIBSP Research Institute  Barcelona Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5877-4074","authenticated-orcid":false,"given":"Rima","family":"Nabbout","sequence":"additional","affiliation":[{"name":"Reference Centre for Rare Epilepsies, Department of Paediatric Neurology, Necker Enfants Malades Hospital, APHP Imagine Institute U1163, Universit\u00e9 Paris cit\u00e9  Paris France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9860-8246","authenticated-orcid":false,"given":"Isabella","family":"Brambilla","sequence":"additional","affiliation":[{"name":"Dravet Italia Onlus  Verona Italy"},{"name":"Epag ERN EpiCare  Verona Italy"},{"name":"Research Center for Pediatric Epilepsies (CREP), Department of Surgery, Dentistry, Paediatrics and Gynecology University of Verona  Verona Italy"},{"name":"Alleanza Epilessie Rare e Complesse  Verona 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