PDF(Pubmed)
Abstract：
The implementation and potential of ketogenic dietary therapies (KDTs) have changed over time. The organization of KDT services, the availability of multidisciplinary teams, resources and support for patients and families still vary widely around the world. This diversity is reflected by a lack of consistency in reported outcomes, optimization of using KDT and KDT compliance. To highlight the unmet needs for KDT services, the ERN EpiCARE Ketogenic Dietary Therapy Special Interest Group (KDT SIG) conducted an online survey on KDT implementation and utilization, addressing the following topics: Use and completeness of guidelines and protocols; assessment of compliance and outcome parameters, sustainability and inclusivity in daily life. Consistently reported unmet needs included the lack of psychological support and resources to measure and improve adherence to KDT, the lack of inclusion strategies, and shared guidelines and protocols adapting to specific needs. Future interventions should focus primarily on educational and informative measures together with creation of shared protocols for complex care. PLAIN LANGUAGE SUMMARY: This study provides the results of a survey compiled by clinicians and patients representatives belonging to ERN Epicare, designed to unravel unmet needs from both patients\' and healthcare practitioners\' perspectives during ketogenic dietary therapies (KDT) provision. Importantly, results show the need to create new shared protocols and guidelines meant for KDT use in complex care situations and to develop future strategies initiatives to support patients improving their social inclusivity.
摘要：
生酮饮食疗法（KDTs）的实施和潜力随着时间的推移而发生了变化。KDT服务的组织，多学科团队的可用性，世界各地对患者和家庭的资源和支持仍然存在很大差异。这种多样性反映在报告的结果缺乏一致性，优化使用KDT和KDT合规性。为了突出KDT服务未满足的需求，ERNEpiCARE生酮饮食治疗特别兴趣小组（KDTSIG）对KDT的实施和利用进行了在线调查，解决以下主题：指南和协议的使用和完整性；合规性和结果参数的评估，日常生活中的可持续性和包容性。不断报告的未满足需求包括缺乏心理支持和资源来衡量和改善对KDT的遵守情况，缺乏包容性战略，以及适应特定需求的共享准则和协议。未来的干预措施应主要集中在教育和信息措施上，并创建用于复杂护理的共享协议。本研究提供了由属于ERNEpicare的临床医生和患者代表编制的调查结果，旨在在提供生酮饮食疗法（KDT）期间，从患者和医疗保健从业人员的角度解开未满足的需求。重要的是,结果表明,需要创建新的共享协议和指南,以便在复杂的护理情况下使用KDT,并制定未来的战略计划,以支持患者改善其社会包容性.
