Unraveling unmet needs in ketogenic dietary services: An ERN EpiCARE survey

De Giorgis, Valentina; Pasca, Ludovica; Aznar Laín, Gemma; Bibic, Irena; Bibic, Vedrana; Darra, Francesca; Dianin, Alice; Dressler, Anastasia; Jonsson, Henna; Komulainen-Ebrahim, Jonna; Kverneland, Magnhild; Molteberg, Ellen; Ragona, Francesca; De Saint-Martin, Anne; Varesio, Costanza; Cross, J. Helen; ERN EpiCARE Ketogenic Dietary Therapy Special Interest Group (KDT SIG)

Unraveling unmet needs in ketogenic dietary services: An ERN EpiCARE survey

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dc.contributor.author De Giorgis, Valentina
dc.contributor.author Pasca, Ludovica
dc.contributor.author Aznar Laín, Gemma
dc.contributor.author Bibic, Irena
dc.contributor.author Bibic, Vedrana
dc.contributor.author Darra, Francesca
dc.contributor.author Dianin, Alice
dc.contributor.author Dressler, Anastasia
dc.contributor.author Jonsson, Henna
dc.contributor.author Komulainen-Ebrahim, Jonna
dc.contributor.author Kverneland, Magnhild
dc.contributor.author Molteberg, Ellen
dc.contributor.author Ragona, Francesca
dc.contributor.author De Saint-Martin, Anne
dc.contributor.author Varesio, Costanza
dc.contributor.author Cross, J. Helen
dc.contributor.author ERN EpiCARE Ketogenic Dietary Therapy Special Interest Group (KDT SIG)
dc.date.accessioned 2025-04-24T06:12:27Z
dc.date.available 2025-04-24T06:12:27Z
dc.date.issued 2024
dc.description.abstract 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. PLAIN LANGUAGE SUMMARY: 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.
dc.format.mimetype application/pdf
dc.identifier.citation De Giorgis V, Pasca L, Aznar-Lain G, Bibic I, Bibic V, Darra F, et al. Unraveling unmet needs in ketogenic dietary services: An ERN EpiCARE survey. Epilepsia Open. 2024 Aug;9(4):1582-8. DOI: 10.1002/epi4.12968
dc.identifier.doi http://dx.doi.org/10.1002/epi4.12968
dc.identifier.issn 2470-9239
dc.identifier.uri http://hdl.handle.net/10230/70186
dc.language.iso eng
dc.publisher Wiley
dc.relation.ispartof Epilepsia Open. 2024 Aug;9(4):1582-8
dc.rights © 2024 The Author(s). Epilepsia Open published by Wiley Periodicals LLC on behalf of International League Against Epilepsy. This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License (http://creativecommons.org/licenses/by-nc-nd/4.0/), which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.
dc.rights.accessRights info:eu-repo/semantics/openAccess
dc.rights.uri http://creativecommons.org/licenses/by-nc-nd/4.0/
dc.subject.keyword ERN‐EpiCARE
dc.subject.keyword Epilepsy
dc.subject.keyword Ketogenic dietary therapies
dc.subject.keyword Patient centered outcomes
dc.subject.keyword Unmet needs
dc.title Unraveling unmet needs in ketogenic dietary services: An ERN EpiCARE survey
dc.type info:eu-repo/semantics/article
dc.type.version info:eu-repo/semantics/publishedVersion

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