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关于儿童-成人过渡的德尔菲共识结果:意大利癫痫联盟(LICE)癫痫过渡工作组的研究成果

Delphi consensus finding on paediatric-adult transition: results from the epilepsy transition working group of the italian league against epilepsy (LICE).

作者信息

Darra F, Klaus P Biermann, Audenino D, Bisulli F, Cossu A, Elia M, La Neve A, Mancardi M, Pastori C, Proietti J, Ragona F, Rizzi R, Rosati A, Sciruicchio V, Specchio N, Stipa C, Zanus C, Villani F

机构信息

Unit of Child Neuropsichiatry, Azienda Ospedaliera Universitaria Integrata of Verona, Italy (Full Member of European Reference Network EpiCARE), Verona, Italy.

Department of Innovation Medicine and Engineering, University of Verona, Verona, Italy.

出版信息

Neurol Sci. 2025 Jun 4. doi: 10.1007/s10072-025-08166-y.

Abstract

PURPOSE AND RATIONALE

The care for paediatric and transitional-age epilepsy patients has expanded significantly, addressing the diverse needs of patients with self-limiting to lifelong conditions. Approximately one-third of patients with childhood-onset epilepsy remain dependent on parental care, with transition influenced by factors such as seizure frequency, drug resistance, comorbidities, and developmental disabilities. The Italian League Against Epilepsy (LICE) initiated a Delphi consensus to establish common guidelines for effective transition practices.

METHODS

The consensus process included a literature review, thematic analysis, and iterative surveys using the Delphi Technique. The surveys involved 15 clinicians from LICE centres, forming the Epilepsy Transition Working Group (ETWG), and external experts. The surveys gathered expert opinions, with questions designed from evidence-based thematic areas.

RESULTS

The Delphi rounds revealed several findings. Effective pediatric-to-adult transition in epilepsy requires a multidisciplinary approach, including child and adolescent neuropsychiatrists, continuous training for healthcare providers, and active involvement of caregivers. The transition process should start at variable ages depending on the type of epilepsy and associated comorbidities, and it should mitigate risk factors and address psychological stress for patients and caregivers. Items related to transition tools did not reach consensus, highlighting the need for standardized screening questionnaires and measurable outcomes.

CONCLUSIONS

This study emphasizes the necessity of an organized transition model involving various specialists and a tailored timeline. The consensus underscores the importance of caregiver involvement and unified educational curricula for all epileptologists to ensure effective care transition. The ETWG is building and improving a network of epilepsy centres to implement the organizational model derived from this study.

摘要

目的与理论依据

对儿科及过渡年龄癫痫患者的护理已显著扩展,以满足从自限性疾病到终身疾病患者的多样化需求。约三分之一的儿童期起病癫痫患者仍依赖父母照顾,而过渡受癫痫发作频率、耐药性、合并症和发育障碍等因素影响。意大利癫痫防治联盟(LICE)发起了一项德尔菲共识,以制定有效过渡措施的通用指南。

方法

共识过程包括文献综述、主题分析以及使用德尔菲技术进行的迭代调查。调查涉及来自LICE中心的15名临床医生,他们组成了癫痫过渡工作组(ETWG),以及外部专家。调查收集专家意见,问题基于循证主题领域设计。

结果

德尔菲轮次得出了若干结果。癫痫从儿科到成人的有效过渡需要多学科方法,包括儿童和青少年神经精神科医生、对医疗服务提供者的持续培训以及护理人员的积极参与。过渡过程应根据癫痫类型和相关合并症在不同年龄开始,并且应减轻风险因素,解决患者和护理人员的心理压力。与过渡工具相关的项目未达成共识,这凸显了对标准化筛查问卷和可衡量结果的需求。

结论

本研究强调了一个有组织的过渡模式的必要性,该模式涉及各类专家以及量身定制的时间表。该共识强调了护理人员参与以及为所有癫痫专家制定统一教育课程的重要性,以确保有效的护理过渡。ETWG正在建立和完善癫痫中心网络,以实施从本研究得出的组织模式。

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