Nice to know 2: The impact of NICE guidelines on ketogenic diet services in the UK and Ireland - An update

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.