Nice to know: impact of NICE guidelines on ketogenic diet services nationwide

Abstract

BackgroundIn 2012, the National Institute for Health and Care Excellence (NICE) Clinical Guidelines for Epilepsies: Diagnosis and Management (CG137) included, for the first time, ketogenic diets (KDs) as a treatment option for drug‐resistant paediatric epilepsy. The recommendation was made to refer children and young people with epilepsy whose seizures have not responded to appropriate anti‐epileptic drugs to a tertiary paediatric epilepsy specialist for consideration of the use of KDs. We aimed to assess the impact of this change in guidance on the numbers of ketogenic centres and patients following KDs for epilepsy in the UK and Ireland.MethodsAn online survey was circulated to ketogenic dietitians from the UK and Ireland. The results were compared with similar surveys published in 2000 and 2010. ResultsThe number of centres offering KDs for treatment of epilepsy has risen from 22 in 2000, to 28 in 2010, and to 39 in 2017 (77% overall increase). Seven of these centres accept adult referrals, in comparison to only two centres in 2010. Patient numbers have increased from 101 in 2000 to 754 in 2017. In total, 267 patients are waiting to commence KD at 31 centres.ConclusionsOver the last 7 years, the number of patients treated with a KD for epilepsy in the UK and Ireland has increased by 647%, with a 77% increase in the number of centres offering KDs. Despite this rapid growth, there is ongoing demand for patients to be considered for dietary therapy, highlighting the need for continued expansion of KD services nationally.

Biochemical assessment of patients following ketogenic diets for epilepsy: Current practice in the UK and Ireland

“…However, the level of variability among our participating centers seems striking. This may be partially explained by the fact that the expansion of KD services in the UK and Ireland is a recent and somewhat sporadic phenomenon . Only in recent years have technological advances and the creation of national groups, such as KDRN, facilitated liaison across participatory centers, promoting communication, and sharing of resources.…”

“…sporadic phenomenon. 9,10 Only in recent years have technological advances and the creation of national groups, such as KDRN, facilitated liaison across participatory centers, promoting communication, and sharing of resources. Research study protocols, such as those from the original randomized controlled trial at Great Ormond Street 11 and Ketogenic Diet in Infants with Epilepsy (KIWE), 12 may also influence what tests are requested at participating centers.…”

“…Over the past two decades, the number of KD services in the UK and Ireland has increased from 22 to 39, with a concomitant surge in the number of patients on diet (from 101 in 2000 to 754 in 2017) . Centers in the UK and Ireland have local guidance for biochemical assessment and monitoring for KD patients but, to date, there has been no comparison nor consolidation of existing practices.…”

“…7 Over the past two decades, the number of KD services in the UK and Ireland has increased from 22 to 39, with a concomitant surge in the number of patients on diet (from 101 in 2000 8 to 754 in 2017). 9 Centers in the UK and Ireland have local guidance for biochemical assessment and monitoring for KD patients but, to date, there has been no comparison nor consolidation of existing practices. Many of the biochemical tests required during KD treatment must be sent to specialist centers, further inflating costs and delays to treatment, conflicting with the current climate of the National Health Service (NHS), where services aim to be clinically and cost-effective.…”

Recommendations for dietetics in mental healthcare

“…Whiteley et al . (2019) explored the effect of the introduction of the National Institute for Clinical Excellence (NICE) Guidelines for Epilepsies: Diagnosis and Management on dietetic services, finding a 647% increase in the number of patients being treated with a ketogenic diet for epilepsy, as well as a 77% increase in the number of centres offering a ketogenic diet, in the U.K. and Ireland, within the 7‐year period .…”