An international survey on withdrawing the ketogenic diet therapy for epilepsy

Abstract

Background: While initiation and maintenance guidelines for ketogenic diet therapies (KDT) are well established, evidence guiding KDT discontinuation remains limited. We aim to explore practices surrounding KDT weaning and identify key factors influencing clinical decisions.

Methods: An online 24-question survey was distributed via the International Neurological Ketogenic Society (INKS) between March and May 2024. Responses from 53 healthcare professionals (HCPs), including dietitians and physicians, from diverse global regions were analyzed.

Results: Most HCPs adopt individualized KDT weaning protocols, often after 2 years of effective KDT, with weaning durations typically lasting 2 to 6 months. Factors influencing discontinuation include seizure control, epilepsy syndrome, diet tolerance, and family preferences. EEG monitoring and ketone tracking during weaning are common practices. For effective KDT, a gradual reduction in dietary ratio is preferred, with various strategies used (e.g., stepwise ratio reduction, liberalizing carbohydrates). Adherence issues and concerns about seizure recurrence are frequent challenges.

Conclusion: KDT weaning remains a heterogeneous and under-studied aspect of treatment. Despite variations in protocols, common themes include cautious tapering and syndrome-specific considerations. These findings highlight the need for prospective studies to establish evidence-based data for KDT discontinuation.

Keywords: Drug Resistant Epilepsy; Epilepsy; Ketogenic diet; Survey; Weaning.