Investigation of the implementation and utilization of ketogenic diet therapy in China : For the Commission on Standardized Development of Epilepsy Centers and Commission on Ketogenic Diet, China Association Against Epilepsy

中国生酮饮食疗法实施与应用情况调查:中国抗癫痫协会癫痫中心规范化建设委员会和生酮饮食委员会报告

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Abstract

BACKGROUND: Ketogenic diet therapy (KDT), characterized by a high-fat, low-carbohydrate composition with adequate protein and other nutrients for growth, has emerged as an effective therapeutic approach for drug-resistant epilepsy. This study was designed to investigate the existing challenges in KDT implementation and evaluate its current utilization status within the Chinese healthcare context. METHODS: From August 27 to September 5, 2024, a comprehensive questionnaire was disseminated to 418 epilepsy centers throughout China via the Commission on Standardized Development of Epilepsy Centers and the Commission on KDT, which operate under the auspices of the China Association Against Epilepsy (CAAE). The distribution leveraged both email and WeChat platforms to ensure broad reach and accessibility. The survey instrument encompassed five key domains: (1) baseline characteristics of surveyed epilepsy centers, (2) clinical application of KDT, (3) the efficacy of KDT: perspectives from epilepsy centers, (4) the adverse effects of KDT, and (5) implementation challenges and recommendations for KDT adoption. All the collected data were analyzed using descriptive statistical methods. RESULTS: We received 258 completed questionnaires, for a response rate of 62%. Among the responding epilepsy centers, the classic KDT (cKDT) was utilized by 63% of the centers, the modified Atkins diet (MAD) was utilized by 40% of the centers, the low-glycemic-index treatment (LGIT) was utilized by 20% of the centers, and the medium-chain triglyceride (MCT) diet was utilized by 25% of the centers. The most significant barrier to KDT implementation was identified as limited KDT-related expertise among clinical practitioners, reported by 83% of the respondents. Additionally, improving patient and family education programs on KDT management was the most frequently cited factor (93%) for increasing KDT utilization. The data revealed strong clinical need for promoting KDT implementation, particularly in the management of super-refractory status epilepticus and refractory status epilepticus. Among the 120 epilepsy centers that implemented KDT, 27 reported cases of gastrointestinal adverse reactions. CONCLUSIONS: This study constitutes the first nationwide comprehensive investigation into the clinical application of KDT in China. The results reveal a notably limited adoption of KDT across epilepsy centers, despite its well-documented therapeutic efficacy and favorable safety profile. The current implementation remains limited to a select number of specialized centers and a relatively small patient population, primarily due to insufficient awareness and understanding among healthcare practitioners. These findings provide evidence-based insights that underscore the necessity for strategic initiatives to promote wider implementation of KDT in clinical practice.

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