Author(s): Whiteley V.J.; Schoeler N.; Taylor H.; Carroll J.; Martin K.
Source: Developmental Medicine and Child Neurology; Dec 2017; vol. 59 ; p. 84
Publication Date: Dec 2017
Publication Type(s): Conference Abstract
Available at Developmental Medicine and Child Neurology – from Wiley Online Library Full Collection
Abstract:Objective: Ketogenic diets are an effective treatment for drug-resistant epilepsy. In the reviewed NICE Clinical Guidelines for Epilepsies: diagnosis and management (CG137) 2012, 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 a ketogenic diet. We aimed to assess the impact of this change in guidance on numbers of ketogenic centres and patients following ketogenic diets for epilepsy in the UK and Ireland. Methods: An online questionnaire was completed by ketogenic dietitians from the UK and Ireland. Results were compared to similar surveys published in 2000 and 2010. Results: The number of centres offering ketogenic diets for treatment of epilepsy has grown from 22 in 2000, to 28 in 2010 and to 39 centres in 2017 (77% overall increase). Seven of these centres now accept adult referrals, in comparison to two services in 2010. Patient numbers have increased from 101 in 2000, to 152 in 2010 and to 754 in 2017 (over seven fold increase). 31 centres have a waiting list (range 1-49 patients). 267 patients in total are waiting to start a ketogenic diet. Conclusions: The number of patients treated on a ketogenic diet for epilepsy has increased by 647% with an increase of over two thirds in the number of centres offering the diet, over the last seven years. Although not indicated in current NICE guidance, there has been an increase in availability of adult services. Despite the rapid increase in services and increased availability of the diet, there is ongoing demand for patients to be considered for dietary therapy, highlighting the need for continued expansion of services nationally.