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

被引：2

作者：

De Giorgis, Valentina ^{[1
,2
,3
]}

Pasca, Ludovica ^{[1
,2
,3
]}

Aznar-Lain, Gemma ^{[4
,5
]}

Bibic, Irena ^{[6
]}

Bibic, Vedrana ^{[6
]}

Darra, Francesca ^{[7
,8
]}

Dianin, Alice ^{[9
,10
]}

Dressler, Anastasia ^{[11
,12
]}

Jonsson, Henna ^{[13
,14
,15
,16
]}

Komulainen-Ebrahim, Jonna ^{[17
,18
,19
]}

Kverneland, Magnhild ^{[20
,21
]}

Molteberg, Ellen ^{[20
,21
,22
]}

Ragona, Francesca ^{[23
,24
]}

de Saint-Martin, Anne ^{[25
,26
]}

Varesio, Costanza ^{[1
,2
,3
]}

Cross, J. Helen ^{[27
,28
]}

机构：

[1] Univ Pavia, Dept Brain & Behav Neurosci, Pavia, Italy

[2] IRCCS Mondino Fdn, Child Neurol & Psychiat Unit, Pavia, Italy

[3] European Reference Network EpiCARE, Pavia, Italy

[4] CREI, Barcelona, Spain

[5] European Reference Network EpiCARE, Barcelona, Spain

[6] Dravet Sindrom Hrvatska, Split, Croatia

[7] Univ Verona, Dept Engn Innovat Med, Child Neuropsychiat Unit, Verona, Italy

[8] European Reference Network EpiCARE, Verona, Italy

[9] Azienda Osped Univ Integrata, Inherited Metab Dis Unit, Verona, Italy

[10] Azienda Osped Univ Integrata, Reg Ctr Newborn Screening Diag & Treatment Inherit, Verona, Italy

[11] Med Univ Vienna, Dept Paediat & Adolescent Med, Div Neonatol Paediat Intens Care & Neuropaediat, Vienna, Austria

[12] European Reference Network EpiCARE, Vienna, Austria

[13] New Childrens Hosp, Dept Pediat Neurol, Helsinki, Finland

[14] Helsinki Univ Hosp, Pediat Res Ctr, Epileps Helsinki, Helsinki, Finland

[15] Univ Helsinki, Helsinki, Finland

[16] European Reference Network EpiCARE, Helsinki, Finland

[17] Univ Oulu, Oulu Univ Hosp, Clin Med & Med Res Ctr, Res Unit, Oulu, Finland

[18] NOHD, Oulu, Finland

[19] European Reference Network EpiCARE, Oulu, Finland

[20] Oslo Univ Hosp, Natl Ctr Epilepsy, Oslo, Norway

[21] European Reference Network EpiCARE, Oslo, Norway

[22] Univ Oslo, Inst Clin Med, Oslo, Norway

[23] IRCCS Fdn Carlo Besta Neurol Inst, Dept Pediat Neurol, Milan, Italy

[24] European Reference Network EpiCARE, Milan, Italy

[25] USIAS, Strasbourg, France

[26] European Reference Network EpiCARE, Strasbourg, France

[27] UCL, Dev Neurosci Res & Teaching Dept, Inst Child Hlth, NIHR BRC Great Ormond St, London, England

[28] Great Ormond St Hosp Sick Children, Paediat Neurosci, London, England

来源：

EPILEPSIA OPEN | 2024年 / 9卷 / 04期

关键词：

epilepsy; ERN-EpiCARE; ketogenic dietary therapies; patient centered outcomes; unmet needs; NATIONAL CONSENSUS;

D O I：

10.1002/epi4.12968

中图分类号：

R74 [神经病学与精神病学];

学科分类号：

摘要：

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.

引用

页码：1582 / 1588

页数：7

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