Ketogenic Dietitians Research Network

KDRN Newsletter – January 2018

Project Updates

1. Survey of KD Services across the UK and Ireland

Project aim:

  • Comparison with 2000 and 2010 surveys, to assess the impact of KD service provision across the UK and Ireland since the change in NICE guidance in 2012, and to provide a base for further research.
  • Highlight where other KD centres are located to enable communication between centres and sharing of knowledge.

Update:

  • Survey results received from 27 centres; preliminary results shared with KDRN at November meeting.
  • Work presented at the British Paediatric Neurology Association (BPNA) conference in Jan 2018 as a poster and oral presentation! See p. 3 of newsletter for abstract.

Future plans:

  • Production of manuscript describing wider survey results.

2. Nutritional Biochemistry and KDs

Project aim:

  • Outline of current UK practice of nutritional blood tests requested for patients starting or following a KD.
  • Devise recommendations for future practice in collaboration with medics and biochemists with exper-tise in KD.

Progress:

  • Results received from 14 centres: tests requested at baseline, 3-months, 6-, 12-, 18–, 24– and 24+ months.
  • Test costings received from 7 participating centres.
  • Literature review of nutritional blood tests currently underway by working party to determine: what changes (if any) in nutritional biochemistry parameters have been reported in patients following a KD for epilepsy; what is the impact of abnormal levels of each biochemical parameter in normal populations?
  • Funding application submitted.

Future plans:

  • Share literature review findings at KDRN February 2018 meeting.
  • Working party to meet with biochemists and consultant neurologist.
  • Production of manuscript of results and recommendations.

3. Modified ketogenic diets: ‘How MAD are we?’

Project aim: An overview of adult and paediatric modified ketogenic diet (MKD) practice in the UK. Is the MKD different to the Modified Atkin’s diet (MAD) and, if so, in what ways? There is very little published data regarding the use of MKD in the UK 

Progress: 

  • Survey has been formulated to collect information on current MKD practice. The data collection tool has been piloted and distributed to KDRN and KetoPAG group. 

Future plans:

  • Collation of data—to be summarised in Feb 2018 meeting—and production of manuscript.

Group Constitution

We have formulated a written Group Constitution and a statement about the involvement of industry and charity with the KDRN. Please get in touch if you would like a copy. 

The votes are in for the KDRN Executive Committee roles! Details overleaf. 

The KDRN is a clinical research group, which is currently not affiliated to any single professional body—to be discussed further in the New Year! 

First Abstract Accepted!

The KDRN’s first project was presented at the British Paediatric Neurology Association (BPNA) in January 2018, represented by Vicki Whiteley. 

NICE to know: Impact of NICE Guidelines on Ketogenic Diet Services Nationwide

Objective: 

The ketogenic diet is an effective treatment for drug-resistant epilepsy. In the re-viewed 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 cen-tres 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 on-going demand for patients to be considered for the diet, highlighting the need for continued improvements in services nationally. 

Volunteers Welcome!

Please contact us if you would like to get involved with any of our projects. Collaborations are invaluable for gaining research experience and building relationships with other KD centres.