Whiteley, Victoria J;
Schoeler, Natasha E;
(2024)
Nice to know 2: The impact of NICE guidelines on ketogenic diet services in the UK and Ireland – An update.
Journal of Human Nutrition and Dietetics
10.1111/jhn.13359.
(In press).
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Abstract
Background: Ketogenic diet therapy (KDT) has been recommended as a treatment for drug-resistant epilepsy in children and young people since 2012 in the National Institute for Health and Care Excellence Clinical Guidelines for Epilepsies. The Ketogenic Dietitians Research Network completed a survey in 2017 to assess the impact of these guidelines. // Methods: An online survey was circulated to ketogenic dietitians across the UK and Ireland. The results were compared with those of the 2017 survey. // Results: The number of individuals following KDT was 854, comprising an increase of 13% since 2017. Service sizes ranged widely, with 1–74 (median 16) patients on the diet. Of 36 services, 30 had a waiting list, ranging from 2 to 67 (median 9) patients. The classical diet continued to be the most common KDT used (58% of patients). Ten services reported use of a new flexible medium chain triglyceride protocol. Some 48% of patients (n = 427) had been following the KDT for over 2 years, comprising an 18% increase since 2017. Of these, 68 (15.9%) had attempted to wean off KDT but had to re-start as a result of a deterioration in seizures. // Conclusions: The number of individuals following medical KDT remains stable. Referral numbers and waiting lists remain high, highlighting that KDT is still a well-recognised treatment option for drug-resistant epilepsy. The types of KDT used are similar to previous years, although increasingly flexible protocols are being adopted. Longer-term use of KDT is increasing, with a proportion of patients requiring long-term use to maintain seizure control.
| Type: | Article |
|---|---|
| Title: | Nice to know 2: The impact of NICE guidelines on ketogenic diet services in the UK and Ireland – An update |
| DOI: | 10.1111/jhn.13359 |
| Publisher version: | http://dx.doi.org/10.1111/jhn.13359 |
| Language: | English |
| Additional information: | This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions. |
| Keywords: | Epilepsy; high-fat; ketogenic diet; ketogenic diet services; low-carbohydrate |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health > Developmental Neurosciences Dept |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10199388 |
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