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

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 c...

Descripción completa

Detalles Bibliográficos
Autores: 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)
Tipo de recurso: artículo
Estado:Versión publicada
Fecha de publicación:2024
País:España
Institución:Varias* (Consorci de Biblioteques Universitáries de Catalunya, Centre de Serveis Científics i Acadèmics de Catalunya)
Repositorio:Recercat. Dipósit de la Recerca de Catalunya
OAI Identifier:oai:recercat.cat:10230/70186
Acceso en línea:http://hdl.handle.net/10230/70186
http://dx.doi.org/10.1002/epi4.12968
Access Level:acceso abierto
Palabra clave:ERN‐EpiCARE
Epilepsy
Ketogenic dietary therapies
Patient centered outcomes
Unmet needs
id ES_020fc9dd52f2cb06bfd417744dec5e64
oai_identifier_str oai:recercat.cat:10230/70186
network_acronym_str ES
network_name_str España
repository_id_str
spelling Unraveling unmet needs in ketogenic dietary services: An ERN EpiCARE surveyDe Giorgis, ValentinaPasca, LudovicaAznar Laín, GemmaBibic, IrenaBibic, VedranaDarra, FrancescaDianin, AliceDressler, AnastasiaJonsson, HennaKomulainen-Ebrahim, JonnaKverneland, MagnhildMolteberg, EllenRagona, FrancescaDe Saint-Martin, AnneVaresio, CostanzaCross, J. HelenERN EpiCARE Ketogenic Dietary Therapy Special Interest Group (KDT SIG)ERN‐EpiCAREEpilepsyKetogenic dietary therapiesPatient centered outcomesUnmet needsThe 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.Wiley202520252024info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionapplication/pdfapplication/pdfhttp://hdl.handle.net/10230/70186http://dx.doi.org/10.1002/epi4.12968http://hdl.handle.net/10230/70186reponame:Recercat. Dipósit de la Recerca de Catalunyainstname:Varias* (Consorci de Biblioteques Universitáries de Catalunya, Centre de Serveis Científics i Acadèmics de Catalunya)InglésEpilepsia Open. 2024 Aug;9(4):1582-8© 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.http://creativecommons.org/licenses/by-nc-nd/4.0/info:eu-repo/semantics/openAccessoai:recercat.cat:10230/701862026-05-29T05:05:01Z
dc.title.none.fl_str_mv Unraveling unmet needs in ketogenic dietary services: An ERN EpiCARE survey
title Unraveling unmet needs in ketogenic dietary services: An ERN EpiCARE survey
spellingShingle Unraveling unmet needs in ketogenic dietary services: An ERN EpiCARE survey
De Giorgis, Valentina
ERN‐EpiCARE
Epilepsy
Ketogenic dietary therapies
Patient centered outcomes
Unmet needs
title_short Unraveling unmet needs in ketogenic dietary services: An ERN EpiCARE survey
title_full Unraveling unmet needs in ketogenic dietary services: An ERN EpiCARE survey
title_fullStr Unraveling unmet needs in ketogenic dietary services: An ERN EpiCARE survey
title_full_unstemmed Unraveling unmet needs in ketogenic dietary services: An ERN EpiCARE survey
title_sort Unraveling unmet needs in ketogenic dietary services: An ERN EpiCARE survey
dc.creator.none.fl_str_mv 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)
author De Giorgis, Valentina
author_facet 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)
author_role author
author2 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)
author2_role author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
dc.subject.none.fl_str_mv ERN‐EpiCARE
Epilepsy
Ketogenic dietary therapies
Patient centered outcomes
Unmet needs
topic ERN‐EpiCARE
Epilepsy
Ketogenic dietary therapies
Patient centered outcomes
Unmet needs
description 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.
publishDate 2024
dc.date.none.fl_str_mv 2024
2025
2025
dc.type.none.fl_str_mv info:eu-repo/semantics/article
info:eu-repo/semantics/publishedVersion
format article
status_str publishedVersion
dc.identifier.none.fl_str_mv http://hdl.handle.net/10230/70186
http://dx.doi.org/10.1002/epi4.12968
http://hdl.handle.net/10230/70186
url http://hdl.handle.net/10230/70186
http://dx.doi.org/10.1002/epi4.12968
dc.language.none.fl_str_mv Inglés
language_invalid_str_mv Inglés
dc.relation.none.fl_str_mv Epilepsia Open. 2024 Aug;9(4):1582-8
dc.rights.none.fl_str_mv http://creativecommons.org/licenses/by-nc-nd/4.0/
info:eu-repo/semantics/openAccess
rights_invalid_str_mv http://creativecommons.org/licenses/by-nc-nd/4.0/
eu_rights_str_mv openAccess
dc.format.none.fl_str_mv application/pdf
application/pdf
dc.publisher.none.fl_str_mv Wiley
publisher.none.fl_str_mv Wiley
dc.source.none.fl_str_mv reponame:Recercat. Dipósit de la Recerca de Catalunya
instname:Varias* (Consorci de Biblioteques Universitáries de Catalunya, Centre de Serveis Científics i Acadèmics de Catalunya)
instname_str Varias* (Consorci de Biblioteques Universitáries de Catalunya, Centre de Serveis Científics i Acadèmics de Catalunya)
reponame_str Recercat. Dipósit de la Recerca de Catalunya
collection Recercat. Dipósit de la Recerca de Catalunya
repository.name.fl_str_mv
repository.mail.fl_str_mv
_version_ 1869402628366008320
score 15.812455

Similares en LA Referencia