Evidence map›Paper›PMID 38952082›Full record

ArticleEpilepsia open2024

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

Valentina De Giorgis, Ludovica Pasca, Gemma Aznar-Lain, Irena Bibic, Vedrana Bibic, Francesca Darra, Alice Dianin, Anastasia Dressler, Henna Jonsson, Jonna Komulainen-Ebrahim and 7 more

Abstract read
In one paragraph

Article in Epilepsia open, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

3 citing papers in PubMed.

  1. Review
  2. Observational
  3. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

17 authors.

Valentina De GiorgisDepartment of Brain and Behaviour Neuroscience, University of Pavia, Pavia, Italy.ORCID https://orcid.org/0000-0002-5828-7070
Ludovica PascaDepartment of Brain and Behaviour Neuroscience, University of Pavia, Pavia, Italy.ORCID https://orcid.org/0000-0003-4382-0095
Gemma Aznar-LainPaediatric Neurology, Hospital del Mar, Hospital del Mar Reasearch Institute (IMIM), University Pompeu Fabra, Full Member of European Reference Network EpiCARE, Barcelona, Spain.
Irena BibicDravet Sindrom Hrvatska, ePAG of European Reference Network EpiCARE, Split, Croatia.
Vedrana BibicDravet Sindrom Hrvatska, ePAG of European Reference Network EpiCARE, Split, Croatia.
Francesca DarraChild Neuropsychiatry Unit, Department of Engineering for Innovation Medicine, University of Verona, Full Member of European Reference Network EpiCARE, Verona, Italy.ORCID https://orcid.org/0000-0002-1062-8438
Alice DianinInherited Metabolic Diseases Unit and Regional Centre for Newborn Screening, Diagnosis and Treatment of Inherited Metabolic Diseases and Congenital Endocrine Diseases, Azienda Ospedaliera Universitaria Integrata, Verona, Italy.
Anastasia DresslerDivision of Neonatology, Paediatric Intensive Care and Neuropaediatrics, Department of Paediatrics and Adolescent Medicine, Medical University of Vienna, Full Member of European Reference Network EpiCARE, Vienna, Austria.ORCID https://orcid.org/0000-0002-1518-8646
Henna JonssonDepartment of Pediatric Neurology, New Children's Hospital and Pediatric Research Center, Epilepsia Helsinki, Helsinki University Hospital and University of Helsinki, Full Member of European Reference Network EpiCARE, Helsinki, Finland.ORCID https://orcid.org/0000-0001-6908-6584
Jonna Komulainen-EbrahimResearch Unit of Clinical Medicine andMedical Research Center, Oulu University Hospital, University of Oulu, Oulu, Finland.
Magnhild KvernelandNational Centre for Epilepsy, Oslo University Hospital, Full Member of European Reference Network EpiCARE, Oslo, Norway.ORCID https://orcid.org/0000-0003-1778-0835
Ellen MoltebergNational Centre for Epilepsy, Oslo University Hospital, Full Member of European Reference Network EpiCARE, Oslo, Norway.ORCID https://orcid.org/0000-0002-5716-8061
Francesca RagonaDepartment of Pediatric Neurology, IRCCS Foundation Carlo Besta Neurological Institute, Full Member of European Reference Network EpiCARE, Milan, Italy.
Anne de Saint-MartinDepartment of Pediatric Neurology, Strasbourg University Hospital, Full Member of European Reference Network EpiCARE, Strasbourg, France.ORCID https://orcid.org/0000-0003-4666-5369
Costanza VaresioDepartment of Brain and Behaviour Neuroscience, University of Pavia, Pavia, Italy.ORCID https://orcid.org/0000-0001-5645-021X
J Helen CrossDevelopmental Neurosciences Research and Teaching Department, University College London NIHR BRC Great Ormond Street Institute of Child Health, London, UK.ORCID https://orcid.org/0000-0001-7345-4829
ERN EpiCARE Ketogenic Dietary Therapy Special Interest Group (KDT SIG)

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

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.

Indexed as

Diet, KetogenicEpilepsyHealth Services Needs and DemandHumansNeeds AssessmentSurveys and QuestionnairesepilepsyERN‐EpiCAREketogenic dietary therapiespatient centered outcomesunmet needs

Identifiers

PMID38952082
PMCPMC11296111

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.