Background Many centres across the UK and Ireland anecdotally report using a ‘modified ketogenic diet’ (MKD) as a treatment for refractory epilepsy. Although a MKD is within the spectrum of ketogenic diets (KDs), there is little literature reporting upon its definition, use or clinical effectiveness. We aimed to understand the core principles of MKD practice and to assess whether and how the MKD differs from other KD protocols. Methods An online survey, designed by a consensus group of ketogenic dietitians, was circulated to 39 KD centres across the UK and Ireland. It consisted of 35 questions regarding dietetic practice when providing MKD. Results Eighteen centres completed the questionnaire: 13 paediatric, three adult and two combined centres. All dietitians based MKD ‘prescriptions’ on estimated total energy requirements. The average macronutrient profile was 75% fat and 5% carbohydrate, with protein ad libitum. Carbohydrate and fat targets were implemented via weighed portions (carbohydrate lists n = 18; fat lists n = 13) and ‘household measures’ (carbohydrate lists n = 2; fat lists n = 3). Of the centres, 94% (n = 17) adjusted macronutrients over time; these decisions were based on ketone levels and seizures in most cases (83%; n = 14). Ketogenic nutritional products available on prescription were used by 10 centres (56%) when initiating and by all centres when ‘fine‐tuning’ the MKD. Conclusions A modified ketogenic diet in the UK and Ireland is a hybrid KD, adopting principles from other established KD protocols and defining new elements unique to the MKD. Further research into the clinical and cost‐effectiveness of MKD would be of benefit.

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.

Objective Biochemical assessment is recommended for patients prior to initiating and following a ketogenic diet (KD). There is no published literature regarding current practice in the UK and Ireland. We aimed to explore practice in comparison with international guidelines, determine approximate costs of biochemical testing in KD patients across the UK and Ireland, and promote greater consistency in KD services nationally. Methods A survey was designed to determine the biochemical tests requested for patients at baseline, 3, 6, 12, 18, and 24 months + on KD. The survey was circulated to 39 centers across the UK and Ireland. Results Sixteen centers completed the survey. Full blood count, electrolytes, calcium, liver function tests (LFTs), lipid profile, and vitamin D were requested at all centers at baseline, in keeping with international guidelines. Bicarbonate, total protein, and urinalysis were less consistently requested. Magnesium and zinc were requested by all centers, despite not being specifically recommended for pre‐diet evaluation in guidelines. Urea and electrolyte profiles and some LFTs were consistently requested at follow‐up, in accordance with guidelines. Other LFTs and renal tests, full blood count, lipid profile, acylcarnitine profile, selenium, vitamin D, and urinalysis were less consistently requested at follow‐up. The mean costs of the lowest and highest number of tests requested at baseline in our participating centers were £167.54 and £501.93; the mean costs of the lowest and highest number of tests requested at 3‐month follow‐up were £19.17 and £450.06. Significance Biochemical monitoring of KD patients varies widely across the UK and Ireland and does not fully correspond to international best practice guidelines. With an ongoing drive for cost‐effectiveness within health care, further work is needed to streamline practice while ensuring patient safety.