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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.
Insights
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.
Background:
In 2009, the International Ketogenic Diet Study Group published recommendations for children receiving ketogenic diet (KD) therapy for epilepsy. The document included a table listing epilepsy syndromes and conditions in which the KD has been particularly beneficial, hoping that physicians would refer children for the KD sooner.
Purpose:
To measure the impact of these 2009 recommendations on referral practice, we compared children initiated on the KD at Johns Hopkins Hospital (JHH) 10 years before and after the recommendations.
Results:
Overall, children referred to the KD who met indications increased from the pre- to post-recommendation group, 44 % (112/256) to 69 % (175/255) (p < 0.001), with JHH neurologists specifically referring more frequently (10/112, 9 % to 58/175, 33 %) (p < 0.01). Referrals increased for Glut-1 deficiency (0 % to 2.4 %, p = 0.015), Dravet syndrome (0 % to 6.7 %, p < 0.01), Rett syndrome (0.4 % to 3 %, p = 0.018), and formula-fed only status (16 % to 31 %, p < 0.01). The chances of > 50 % seizure reduction for all children referred improved slightly between decades (56 % to 61 %, p = 0.30).
Conclusions:
Following the 2009 recommendations, our study shows there was an increase in referrals for children with indications at our center. Referrals from neurologists at our own institution increased the most. Ketogenic diet efficacy improved slightly over time but did not reach significance.
