An international survey on withdrawing the ketogenic diet therapy for epilepsy

IF 2.3 3区医学 Q2 BEHAVIORAL SCIENCES

Epilepsy & Behavior Pub Date : 2025-05-28 DOI:10.1016/j.yebeh.2025.110481

Noémie Donnard , Sophie Höhn , Anita M Devlin , Eric H. Kossoff , Natasha E Schoeler , Elles van der Louw , Jong M. Rho , Blandine Dozières-Puyravel , Stéphane Auvin

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引用次数: 0

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.

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撤销生酮饮食治疗癫痫的国际调查

背景：虽然生酮饮食疗法（KDT）的起始和维持指南已经建立，但指导KDT停止的证据仍然有限。我们的目标是探索围绕KDT断奶的实践，并确定影响临床决策的关键因素。方法于2024年3月至5月通过国际神经生酮学会（INKS）进行24个问题的在线调查。来自全球不同地区的53名医疗保健专业人员（HCPs）的回复进行了分析，其中包括营养师和医生。结果大多数HCPs采用个性化的KDT断奶方案，通常在有效KDT治疗2年后，断奶时间通常为2至6个月。影响停药的因素包括癫痫控制、癫痫综合征、饮食耐受性和家庭偏好。在脱机期间进行脑电图监测和酮类追踪是常见的做法。为了有效的KDT，逐渐减少饮食比例是优选的，可以使用各种策略（例如，逐步减少比例，释放碳水化合物）。依从性问题和对癫痫复发的担忧是常见的挑战。结论kdt断奶仍然是一个异质性的治疗方面，研究不足。尽管方案有所不同，但共同的主题包括谨慎的逐渐减少和特定综合征的考虑。这些发现强调需要前瞻性研究来建立KDT停药的循证数据。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Epilepsy & Behavior 医学-行为科学

CiteScore

5.40

自引率

15.40%

发文量

385

审稿时长

43 days

期刊介绍： Epilepsy & Behavior is the fastest-growing international journal uniquely devoted to the rapid dissemination of the most current information available on the behavioral aspects of seizures and epilepsy. Epilepsy & Behavior presents original peer-reviewed articles based on laboratory and clinical research. Topics are drawn from a variety of fields, including clinical neurology, neurosurgery, neuropsychiatry, neuropsychology, neurophysiology, neuropharmacology, and neuroimaging. From September 2012 Epilepsy & Behavior stopped accepting Case Reports for publication in the journal. From this date authors who submit to Epilepsy & Behavior will be offered a transfer or asked to resubmit their Case Reports to its new sister journal, Epilepsy & Behavior Case Reports.