Ketogenic Dietitians Research Network

KDRN Newsletter – October 2021

Latest News

KDRN AGM and Global Keto 2021

The 7th Global Symposium on Medical Ketogenic Dietary Therapies will be held from 19-22nd October 2021 at Hilton Brighton Metropole. We really look forward to kicking the week off with our AGM on Monday 18th October  (midday) and finishing with dinner that evening sponsored by Cambrooke.

  •  Many KDRN members have submitted posters so make sure to check them out  in person or virtually.
  •  If you have a poster presentation please send a poster PDF and a picture of you beside your poster for our KDRN website! 
  • Remember to tweet and tag @KDRN_online  #KDRN #KETO2021
  • If you are attending in person please volunteer for the rota to cover our KDRN stand for a few hours during the conference. 
OTHER NEWS
  • Keto-on-the-clock was published in Nutrients. Click here to view.
  • SIGN Guidelines 159 now available: Epilepsies in children and young people: Investigative procedures and management. Click here to view.
  • We bid a fond farewell and good luck to our co-chair of KDRN, Kirsty Martin-McGill, who is stepping down to focus on her new role as Programme Lead for Dietetics at the University of Chester.
  • A final reminder to please vote to elect your KDRN Committee before Monday 18th October. Click here to vote.

If you are a dietitian or dietetic support worker working in ketogenic-related clinical practice, academia or industry and are interested in joining the group, or collaborating with us, we would love to hear from you! We also offer Associate Membership for dietitians not currently practicing in ketogenic and for other healthcare professionals. Please contact us.

Publications

 A huge well done and thank you to all involved!

Keto-on-the-clock: A survey of dietetic time taken to implement ketogenic diets for drug-resistant epilepsy in the UK

Published in Nutrients, 21st July 2021.  Click here to view.  

Project Updates

1. Keto-on-the-clock (Lead: Bridget Lambert)

Project aim:

  • Evaluate time taken by dietitians to implement and manage children and adults with epilepsy on a KD.
  • Generate information to support future expansion of dietetic services.

Progress: Keto-on-the-clock: A survey of dietetic time taken to implement ketogenic diets for drug-resistant epilepsy in the UK’ was submitted to the European Journal of Clinical Nutrition in September 2020, but turned down at peer review. With some helpful feedback the manuscript was re-worked  submitted to ‘Nutrients’ and accepted. This is an open access journal which has published other ketogenic diet related research. Rachel Meskell and Kathryn Lightfoot have recently presented the results at Vitaflo Ketogenic Symposium on Thursday 29th April.

2. Blended Ketogenic Diet Resource (Lead: Sophie Chidlow & Hannah Queenan)

Project aim: 

  • To develop a blended KD resource for healthcare professionals and families starting a KD. 

Progress: Resource completed. Click here to view  or visit our Resources page for this and many other useful resources for patients, families and health professionals

3. Sweetener Resource (Lead: Justine Urwin)

Project aim: 

  • To develop a resource on use of sweeteners in KD that can be used by health care professionals and families

Progress: Resource completed. Click here to view or visit our Resources page for this and many other useful resources for patients, families and health professionals 

4. Renal stones (Lead: Val Aldridge)

Project aim: 

  • To develop a resource on kidney stones with medical ketogenic diet treatment 

Progress: Resource completed. Click here to view or visit our Resources page for this and many other useful resources for patients, families and health professionals 

5. SIGN Guidelines 159 (Janette Buttle and Helen Grossi)

SIGN 159 Epilepsies in children and young people: Investigative procedures and management now available:

6. KD National Registry (Natasha Schoeler)

Project aim:

  • To set up a prospective national database of individuals with the aim of describing the clinical and sociodemographic profiles of individuals referred for KD for epilepsy, individuals who start therapy and those who continue with KD, with the aim of developing strategies to promote equity of access to KD and long-term adherence  

Progress: We are currently liaising with potential funders to get a pilot registry underway. 

7. Biochemistry Project - Part 2 (Natasha Schoeler & Emma Cameron)

Project aim:

  • To identify if a consensus resource for the interpretation and management of ketogenic biochemistry is warranted. 

Progress: A survey has been undertaken to determine the need for a consensus resource and what it may include; a working party has been formed, including multidisciplinary experts from across the UK, and an initial meeting is planned for later on this year.

8. COVID-19 Survey (Vanessa Bara )

Project aim:

  • To determine changes in dietetic management of KD patients during Covid-19 pandemic 

Progress: The survey was initially sent out in November 2020 and closed in January 2021. 19 responses were received from 17 paediatric and 2 adult dietitians, with all bar one from neurology-based services rather than IMD services. Some of the results were presented at KetoCollege 2021, and an abstract has been accepted for poster presentation at Global Keto in October 2021

9. Impact of KD therapy on growth in children with epilepsy (Natasha Schoeler & Zoe Simpson)

Project aim:

  •  To determine if linear growth and weight are affected in children following KDT in 3 UK centres, and to investigate potential associations with clinical or demographic factors. 

Progress: Data for 247 children have been collected, of which 47 have 1-year post diet data available. Data have been analysed and were presented at Ketoconference, Oct 2020 by UCL Medical Student, Serena Lu. An abstract was also been accepted for poster presentation at the American Epilepsy Society annual meeting, Dec 2020, and Global Keto, Oct 2021. Abstract below:…

Impact of Ketogenic Diet Therapy on growth in children with epilepsy

 Serena Lu, Helena Champion, Nicole Mills, Laura Starace, Zoe Simpson, Victoria J Whiteley, Natasha E Schoeler

Rationale: Ketogenic diet therapy (KDT), a group of high-fat, low-carbohydrate diets, are an effective treatment for drug-resistant epilepsy. There is conflicting evidence regarding impacts of KDT on growth. We aimed to determine if linear growth and weight were affected in children following KDT in the UK, and to investigate potential associations with clinical or demographic factors.

Methods: A retrospective case note review was conducted, including children with epilepsy who followed KDT at three UK centres. Height and weight measurements taken as part of routine clinical management were recorded at baseline, 1, 2 and 3 years on diet, and 1-year post-diet. Anthropometric measurements were converted to z-scores and differences from baseline analysed using Wilcoxon Signed Rank tests. Potential associations of clinical and demographic variables with growth changes were analysed using Mann-Whitney U test or Spearman’s Rank correlation.

Results: 247 children were included, of which 47 had 1-year post diet data available.  Median weight z-score was significantly lower at 3 years compared to baseline (p=0.030). Median height z-score was significantly lower at 1, 2 and 3 years on diet (p=0.045; p=0.000; p=0.002). Neither weight nor height z-score were significantly different to baseline at 1-year post diet (p=0.774, p=0.665).

Younger age at diet onset was associated with a greater decrease in height z-score change at 2 years on diet (p=0.011) and 1-year post-diet (p=0.029). Non-ambulatory children showed greater weight z-score decrease at 3 years (p=0.014), and greater height z-score decrease at 2 years (p=0.029), compared to ambulatory children. Tube-fed children showed greater weight z-score decrease at 2 and 3 years (p=0.019; p=0.024), and greater height z-score decrease at 2 years (p=0.045), compared to orally fed children. Children following modified KDT had less of a decrease in weight z-score at 1 year compared to those following a classical diet (p=0.040), less of a decrease in height z-score compared to those following a classical or MCT KDT at 1 year (p=0.009), and less of a decrease in height z-score compared to those following a classical diet at 2 years (p=0.025). Lower protein prescription (g/kg) was associated with greater weight z-score decrease at 1 year (p=0.008).

Conclusions: In our cohort, height z-score was significantly and consistently decreased compared to baseline in children following KDT for 1-3 years, but this was no longer significant at 1-year post diet.

No variables investigated were consistently associated with growth changes. Modified KDT had less of an impact on growth compared to the more traditional diet types, although differences were not always significant. The limited number of patients with data available at each time point may have contributed to non-significant associations.

Our findings support previous literature showing that KDT can adversely impact linear growth, but that catch-up growth occurs after diet discontinuation. Further investigation with prospective data collection and longer-term follow-up would help inform groups that may be at greater risk of impacted growth from KDT.

10. Pictorial KD Resource (Natasha Schoeler & Nicole Mills)

Project aim:

  • To develop a pictorial resource to support individuals to undertake KD therapy 

Progress: Photos have been taken and the website is in its early stages! Watch this space…..

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.

KDRN Twitter & Website

KDRN has joined the Twitterati!

@KDRN_online

Goal: To shout about the great work of KDRN! Social media policy agreed at November meeting. All posted content should reflect KDRN’s vision and values. 

Administrators: Jen Carroll, Vicki Whitely & Emma Gosling 

GET INVOLVED by following and retweeting

Website Update

We hope you like our new look KDRN website! 

We want to shout about all the great work our KDRN members undertake so please share any updates, conference attendance, presentations, resources etc. Remember to take a picture of you with your poster and send to us! 

Administrators: Hannah Taylor & Jen Carroll 

GET INVOVLED by sending content or ideas to Haannah, Jen or Tracy

Project ideas WELCOME!

Please contact us if you have any ideas for projects.