{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,23]],"date-time":"2026-09-23T08:55:05Z","timestamp":1790153705600,"version":"4.0.1"},"reference-count":14,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2024,7,1]],"date-time":"2024-07-01T00:00:00Z","timestamp":1719792000000},"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":[[2024,8]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:label\/><jats:p>The implementation and potential of ketogenic dietary therapies (KDTs) have changed over time. The organization of KDT services, the availability of multidisciplinary teams, resources and support for patients and families still vary widely around the world. This diversity is reflected by a lack of consistency in reported outcomes, optimization of using KDT and KDT compliance. To highlight the unmet needs for KDT services, the ERN EpiCARE Ketogenic Dietary Therapy Special Interest Group (KDT SIG) conducted an online survey on KDT implementation and utilization, addressing the following topics: Use and completeness of guidelines and protocols; assessment of compliance and outcome parameters, sustainability and inclusivity in daily life. Consistently reported unmet needs included the lack of psychological support and resources to measure and improve adherence to KDT, the lack of inclusion strategies, and shared guidelines and protocols adapting to specific needs. Future interventions should focus primarily on educational and informative measures together with creation of shared protocols for complex care.<\/jats:p><\/jats:sec><jats:sec><jats:title>Plain Language Summary<\/jats:title><jats:p>This study provides the results of a survey compiled by clinicians and patients representatives belonging to ERN Epicare, designed to unravel unmet needs from both patients' and healthcare practitioners' perspectives during ketogenic dietary therapies (KDT) provision. Importantly, results show the need to create new shared protocols and guidelines meant for KDT use in complex care situations and to develop future strategies initiatives to support patients improving their social inclusivity.<\/jats:p><\/jats:sec>","DOI":"10.1002\/epi4.12968","type":"journal-article","created":{"date-parts":[[2024,7,2]],"date-time":"2024-07-02T01:56:12Z","timestamp":1719885372000},"page":"1582-1588","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":5,"title":["Unraveling unmet needs in ketogenic dietary services: An <scp>ERN EpiCARE<\/scp> survey"],"prefix":"10.1002","volume":"9","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-5828-7070","authenticated-orcid":false,"given":"Valentina","family":"De\u00a0Giorgis","sequence":"first","affiliation":[{"name":"Department of Brain and Behaviour Neuroscience University of Pavia  Pavia Italy"},{"name":"Child Neurology and Psychiatry Unit IRCCS Mondino Foundation, Full Member of European Reference Network EpiCARE  Pavia Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4382-0095","authenticated-orcid":false,"given":"Ludovica","family":"Pasca","sequence":"additional","affiliation":[{"name":"Department of Brain and Behaviour Neuroscience University of Pavia  Pavia Italy"},{"name":"Child Neurology and Psychiatry Unit IRCCS Mondino Foundation, Full Member of European Reference Network EpiCARE  Pavia Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gemma","family":"Aznar\u2010Lain","sequence":"additional","affiliation":[{"name":"Paediatric Neurology Hospital del Mar, Hospital del Mar Reasearch Institute (IMIM), University Pompeu Fabra, Full Member of European Reference Network EpiCARE  Barcelona Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Irena","family":"Bibic","sequence":"additional","affiliation":[{"name":"Dravet Sindrom Hrvatska ePAG of European Reference Network EpiCARE  Split Croatia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Vedrana","family":"Bibic","sequence":"additional","affiliation":[{"name":"Dravet Sindrom Hrvatska ePAG of European Reference Network EpiCARE  Split Croatia"}],"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"}]},{"given":"Alice","family":"Dianin","sequence":"additional","affiliation":[{"name":"Inherited Metabolic Diseases Unit and Regional Centre for Newborn Screening, Diagnosis and Treatment of Inherited Metabolic Diseases and Congenital Endocrine Diseases Azienda Ospedaliera Universitaria Integrata  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Finland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jonna","family":"Komulainen\u2010Ebrahim","sequence":"additional","affiliation":[{"name":"Research Unit of Clinical Medicine andMedical Research Center Oulu University Hospital, University of Oulu  Oulu Finland"},{"name":"Department of Children and Adolescents, Division of Pediatric Neurology Oulu University Hospital, Full Member of European Reference Network EpiCARE  Oulu Finland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1778-0835","authenticated-orcid":false,"given":"Magnhild","family":"Kverneland","sequence":"additional","affiliation":[{"name":"National Centre for Epilepsy Oslo University Hospital, Full Member of European Reference Network EpiCARE  Oslo 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