Authors :
Emily Grew, MD – NYU Langone
Dana Amaya, MSRD – NYU Langone
Presenting Author: Parmpreet Dhillon, MD – NYU Langone Health
Rationale:
Effective implementation of the ketogenic diet for epilepsy requires identification of appropriate patients, evaluation for contraindications, and intra-disciplinary supervision with a dietician, physician and regular lab monitoring. We aim to describe the evaluation, initiation and monitoring experiences of our patients on the ketogenic diet for epilepsy and identify areas of improvement for our center.Methods:
We retrospectively reviewed Epic charts of patients on the ketogenic for diet for epilepsy attending at least 3 visits at our center since 2010. Data was collected for initiation and 3, 6, 12, and 24 month visits if available. Data was entered into and analyzed using RedCap. Binary logistic regression was run in SPSS v28.Results:
We identified 107 patients on the ketogenic diet for at least 6 months (3 visits). 20 (18.7%) patients were on the ketogenic diet prior to receiving care at our center. 104 (97.2%) of patients were diagnosed with medically intractable epilepsy; 2 additional patients started keto for GLUT1 deficiency and 1 for Doose syndrome. The most common seizure type was convulsions (41.6%). 74% were developmentally delayed.29 (27.1%) had potential complicating comorbidities defined by international consensus guidelines. 67 (62.6%) ate a regular oral diet, while 34 (31.8%) . At the initial visit, 82.2% had blood work ordered and 70.1% had labs drawn. Age, race, ethnicity, gender, contraindications, comorbidities, G-tube feeding, developmental delay and diet ratio were not significantly associated with diet discontinuation. Additional information is in Table 1.
Across follow up visits, 80.1-88.9% were adherent to the diet. 26.2% of patients discontinued the diet across time points, which increased at each time interval (Table 2). Early reasoning for discontinuation included side effects or lack of improvement; later the most popular reason was difficulty adhering. Patients who experienced side effects were more likely to discontinue the diet (B=1.861, p=0.02). and done in 55.8-63.4% across time points. Ketones were tested in 61.8% of patients at the 3-month visit and only 36.5% by two years. Additional information is in Table 2.
61 (57%) of patients completed our study by continuing at least 2 years on the ketogenic diet, of whom 42 are currently on the diet. Of those completing the study, they were on keto for an average of 7.2 years with a range of 2-33 years. 15 (35.7%) of those currently on the diet had ratio adjustment and 21 (50%) developed further side effects after 2 years. Of those on the diet for 5+ years, 3 (9.1% underwent bone density screening.
Conclusions:
Patients were successfully started and maintained on the ketogenic diet for epilepsy despite the presence of relative contraindications and comorbidities. Further ratio adjustments and side effects after 2 years on the diet demonstrate the need for continued clinical and laboratory monitoring. We identified several areas for improvement including lab and ketone testing and osteoporosis screening. Funding: None