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

Abstract

<jats:title>Abstract</jats:title><jats:sec><jats:title>Background</jats:title><jats:p>In 2012, the National Institute for Health and Care Excellence (<jats:styled-content style="fixed-case">NICE</jats:styled-content>) Clinical Guidelines for Epilepsies: Diagnosis and Management (<jats:styled-content style="fixed-case">CG</jats:styled-content>137) included, for the first time, ketogenic diets (<jats:styled-content style="fixed-case">KD</jats:styled-content>s) 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 <jats:styled-content style="fixed-case">KD</jats:styled-content>s. We aimed to assess the impact of this change in guidance on the numbers of ketogenic centres and patients following <jats:styled-content style="fixed-case">KD</jats:styled-content>s for epilepsy in the <jats:styled-content style="fixed-case">UK</jats:styled-content> and Ireland.</jats:p></jats:sec><jats:sec><jats:title>Methods</jats:title><jats:p>An online survey was circulated to ketogenic dietitians from the <jats:styled-content style="fixed-case">UK</jats:styled-content> and Ireland. The results were compared with similar surveys published in 2000 and 2010. </jats:p></jats:sec><jats:sec><jats:title>Results</jats:title><jats:p>The number of centres offering <jats:styled-content style="fixed-case">KD</jats:styled-content>s 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 <jats:styled-content style="fixed-case">KD</jats:styled-content> at 31 centres.</jats:p></jats:sec><jats:sec><jats:title>Conclusions</jats:title><jats:p>Over the last 7 years, the number of patients treated with a <jats:styled-content style="fixed-case">KD</jats:styled-content> for epilepsy in the <jats:styled-content style="fixed-case">UK</jats:styled-content> and Ireland has increased by 647%, with a 77% increase in the number of centres offering <jats:styled-content style="fixed-case">KD</jats:styled-content>s. Despite this rapid growth, there is ongoing demand for patients to be considered for dietary therapy, highlighting the need for continued expansion of <jats:styled-content style="fixed-case">KD</jats:styled-content> services nationally.</jats:p></jats:sec>