Abstracts

Rationale: Ketogenic dietary therapies (KDT) have become a standard treatment in children with drug-resistant epilepsies. While studies have consistently demonstrated seizure reduction across a range of seizures and epilepsy syndromes, and consensus guidelines for its use have been well reported, there remains heterogeneity across institutions regarding how KDT are administered, how clinics are supported, and how patients are monitored for safety. Our aim was to survey KDT centers across the United States to assess the most common practices and discuss why that variability may be present.

Methods: A survey was sent out to 18 pediatric institutions who were asked to identify the appropriate physician to complete the survey. The neurologists were asked about the structure of their KDT program and clinic organization, KDT initiation, lab monitoring, and side effect management

Results: Sixteen centers, all of whom had dedicated ketogenic dieticians (9 of 16 centers with >1 dietician) and reported KDT starts in the prior year (range 6-42 new starts, median 14), participated in the survey. Half (n=8) have Advanced Practice Providers involved in the ketogenic clinic. The number of epileptologists who manage patients receiving KDT is highly variable, with 38% (n=6) consolidating patients with two providers, while the majority of centers have patients more broadly distributed. Multidisciplinary KDT clinics including a provider and dietician occur in 38% (n=6) of sites, and are more common when patients are managed by only 2 providers (4/6, 67%), rather than more broadly (2/10, 20 %). Only 19% (n=3) have standard social work evaluations prior to KDT start . All centers usually initiate the classic ketogenic diet in the inpatient setting, though 69% (11 out of 16) report outpatient starts as well.
DEXA studies to track bone mineral density are standard at 56% (n=9) centers. Of those, 4 obtain the initial DEXA testing prior to 2 years on KDT, while 5 centers only test in individuals on the KDT for longer periods of time (range 2-5 years to initial test).
All centers screen for nephrolithiasis clinically, though only 38% (n=6) consistently screen urine studies. Twelve (75%) report a protocol for prophylactic buffer utilization. Citrate prophylaxis is used empirically at KDT onset in 19% (n=3) of centers and selectively in classic ketogenic diet patients in another 12% (n=2), whereas 7 (43%) start citrate based on presence of acidosis, urine findings, or concomitant medications (eg topiramate or zonisamide). Nearly all institutions utilize some form of citrate, though 38% report using bicarbonate buffers on occasion.

Conclusions: Despite the extensive use of the KD and well-documented complications, implementation, surveillance, and treatment of the KD and its side effects were quite variable in this survey of 16 US centers. This offers an opportunity for comparative analysis studies attempting to identify optimal KD surveillance as well as identifying areas of possible future clinical studies.

Funding: None