{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,17]],"date-time":"2026-08-17T14:41:45Z","timestamp":1786977705577,"version":"build-2736575974"},"reference-count":44,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2025,2,1]],"date-time":"2025-02-01T00:00:00Z","timestamp":1738368000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Epilepsia Open"],"published-print":{"date-parts":[[2025,4]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>Dravet syndrome is a developmental and epileptic encephalopathy characterized by drug\u2010resistance, lifelong seizures, and significant comorbidities including intellectual and motor impairment. Receiving a diagnosis of Dravet syndrome is challenging for parents\/caregivers, and little research has focused on how the diagnosis should be given. A Delphi consensus process was undertaken to determine key aspects for healthcare professionals (HCPs) to consider when communicating a Dravet syndrome diagnosis to parents\/caregivers.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Following a literature search and steering committee review, 34 statements relating to the first diagnosis consultation were independent\u2010 and anonymously voted on (from 1, totally inappropriate, to 9, totally appropriate) by an international group of expert child neurologists, neuropsychiatrists, nurses, and patient advisory group (PAG) representatives. The statements were divided into five chapters: (i) communication during the first diagnosis consultation, (ii) information to be delivered during the first diagnosis consultation, (iii) points to be reiterated at the end of the first diagnosis consultation, (iv) information to be delivered at subsequent consultations, and (v) communication around genetic testing. Statements receiving \u2265\u200975% of the votes with a score of \u22657 and\/or with a median score of \u22658 were considered consensual.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>The statements were evaluated by 44 HCPs and PAG representatives in the first round of voting; 29 statements obtained strong consensus, 3 received good consensus, and 2 did not reach consensus. The committee reformulated and resubmitted 4 statements for evaluation (42\/44 voters): 3 obtained strong consensus and 1 remained not consensual. The final consensual recommendations include guidance on consultation setting, key disease aspects to convey, how to discuss genetic testing results, disease evolution, and the risk of SUDEP, among other topics.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Significance<\/jats:title>\n                    <jats:p>It is hoped that this international Delphi consensus will facilitate a better\u2010structured initial diagnosis consultation and offer further support for parents\/caregivers at this challenging time of learning about Dravet syndrome.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Plain Language Summary<\/jats:title>\n                    <jats:p>Diagnosis of Dravet syndrome, a rare and severe form of childhood\u2010onset epilepsy, is often challenging to give to parents. This international study developed guidance and recommendations to help healthcare professionals better structure and personalize this disclosure. By following this advice, doctors can provide more tailored support to families, improving their understanding and management of the condition.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1002\/epi4.13127","type":"journal-article","created":{"date-parts":[[2025,2,1]],"date-time":"2025-02-01T09:00:29Z","timestamp":1738400429000},"page":"450-465","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":6,"title":["Communicating a diagnosis of Dravet syndrome to parents\/caregivers: An international Delphi consensus"],"prefix":"10.1002","volume":"10","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-7728-6903","authenticated-orcid":false,"given":"Andreas","family":"Brunklaus","sequence":"first","affiliation":[{"name":"School of Health and Wellbeing University of Glasgow  Glasgow UK"},{"name":"Royal Hospital for Children  Glasgow UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1545-7364","authenticated-orcid":false,"given":"Susanne","family":"Schubert\u2010Bast","sequence":"additional","affiliation":[{"name":"Goethe\u2010University Frankfurt Epilepsy Centre Frankfurt Rhine\u2010Main  Frankfurt am Main Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1062-8438","authenticated-orcid":false,"given":"Francesca","family":"Darra","sequence":"additional","affiliation":[{"name":"Child Neuropsychiatry Unit, Department of Engineering for Innovation Medicine University of Verona (Full Member of European Reference Network EpiCARE)  Verona Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6579-3035","authenticated-orcid":false,"given":"Katherine","family":"Nickels","sequence":"additional","affiliation":[{"name":"Mayo Clinic  Rochester Minnesota USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0000-6317-900X","authenticated-orcid":false,"given":"Delphine","family":"Breuillard","sequence":"additional","affiliation":[{"name":"Reference Center for Rare Epilepsies Necker Hospital, AP\u2010HP  Paris France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Andrea","family":"Giuffrida","sequence":"additional","affiliation":[{"name":"Bambino Ges\u00f9 Children's Hospital  Rome Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8957-9044","authenticated-orcid":false,"given":"Claire","family":"Eldred","sequence":"additional","affiliation":[{"name":"Dravet Syndrome UK  Chesterfield UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Silke","family":"Flege","sequence":"additional","affiliation":[{"name":"Dravet\u2010Syndrom e.V.  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