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Changes in pediatric referrals after the 2009 ketogenic diet consensus recommendations
Rebecca S Stainman1, Zahava Turner2, Eric H Kossoff3
1Departments of Neurology and Pediatrics, Nemours Children's Health-Sidney Kimmel Medical College, Thomas Jefferson University, Philadelphia, PA, USA.
Epilepsy & Behavior : E&B
|April 21, 2024
Summary
The 2009 ketogenic diet (KD) recommendations increased referrals for children with epilepsy. Referrals from neurologists at Johns Hopkins Hospital significantly increased, though KD efficacy showed only a slight, non-significant improvement.
Area of Science:
- Neurology
- Pediatric Epilepsy
- Dietary Therapies
Background:
- The International Ketogenic Diet Study Group published guidelines in 2009 for ketogenic diet (KD) therapy in children with epilepsy.
- These recommendations aimed to facilitate earlier physician referrals for KD treatment.
- A table within the guidelines highlighted epilepsy syndromes and conditions where KD is particularly effective.
Purpose of the Study:
- To evaluate the impact of the 2009 KD recommendations on physician referral practices.
- To compare patient referrals to the ketogenic diet program at Johns Hopkins Hospital (JHH) before and after the 2009 guidelines.
Main Methods:
- A retrospective analysis of children initiated on the KD at JHH.
- Comparison of referral data from the 10 years preceding the 2009 recommendations versus the 10 years following.
Main Results:
- Overall referrals for children meeting KD indications increased significantly from 44% pre-recommendations to 69% post-recommendations (p < 0.001).
- Referrals from JHH neurologists saw a substantial rise, from 9% to 33% (p < 0.01).
- Specific conditions like Glut-1 deficiency, Dravet syndrome, and Rett syndrome showed increased referrals, as did formula-fed infants.
Conclusions:
- The 2009 recommendations led to a documented increase in appropriate referrals for pediatric KD therapy at JHH.
- Internal neurology referrals experienced the most significant growth.
- While a slight improvement in seizure reduction was observed, it did not reach statistical significance.

