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欧洲儿科癌症新型参考网络(ERN PaedCan)儿童中枢神经系统肿瘤多学科会诊小组的一年随访:经验教训与未来展望

One-year follow-up of the new European reference network for pediatric cancers (ERN PaedCan) tumor board for pediatric CNS tumors: lessons learnt and future prospects.

作者信息

Sönksen Marthe, Bison Brigitte, Bußenius Lisa, Rascon Jelena, Obrecht-Sturm Denise, Pizer Barry, Scheinemann Katrin, Schalling Martin, Ladenstein Ruth, Mynarek Martin, Rutkowski Stefan

机构信息

Pediatric Hematology and Oncology, University Medical Center Hamburg-Eppendorf, Martinistr. 52, 20246, Hamburg, Germany.

Diagnostic and Interventional Neuroradiology, Faculty of Medicine, University of Augsburg, Augsburg, Germany.

出版信息

J Neurooncol. 2025 Sep 16. doi: 10.1007/s11060-025-05189-5.

Abstract

PURPOSE

European Reference Networks (ERN) are collaborative networks connecting healthcare professionals across Europe. A virtual multidisciplinary tumor board (VMTB) for children with central nervous system (CNS) tumors was established within the ERN for pediatric oncology (ERN PaedCan) in 2022. We report the experience with this new format.

METHODS

A web-based questionnaire was distributed to physicians for cases presented between November 2022 and November 2023, addressing the implementation of provided recommendations, satisfaction and basic data about the local institution. Baseline information of the presented cases was taken from anonymized VMTB protocols.

RESULTS

In the first year, 19 patients from 11 institutions located in nine European countries were discussed in 21 VMTB. The German national reference center for neuroradiology demonstrated MRI findings in 19/21 (91%) conferences. 19 questionnaires were answered by physicians from all participating countries. Main reason for VMTB presentation were questions about therapy (79%). Presenting institutions treated a median of 10 (5-150) neuro-oncological pediatric patients per year. All hospitals conducted own institutional tumor boards. National central review was available in 3/9 countries (33%). Recommendations were followed, at least partly, in all except one patient experiencing unexpected clinical deterioration. Recommendations were considered helpful in 90%. All participants would recommend the VMTB to colleagues. Technical issues regarding data provision were reported as the main obstacle in 56%.

CONCLUSION

A European VMTB for pediatric patients with CNS tumors is feasible and perceived as useful by the participants. Recommendations were followed frequently. Optimization of privacy-compliant data exchange is crucial for continuance of the format.

摘要

目的

欧洲参考网络(ERN)是连接欧洲各地医疗保健专业人员的合作网络。2022年,在儿科肿瘤学欧洲参考网络(ERN PaedCan)内为患有中枢神经系统(CNS)肿瘤的儿童建立了一个虚拟多学科肿瘤委员会(VMTB)。我们报告了这种新形式的经验。

方法

向医生发放了一份基于网络的问卷,以了解2022年11月至2023年11月期间所呈现病例的情况,问卷涉及所提供建议的实施情况、满意度以及当地机构的基本数据。所呈现病例的基线信息来自匿名的VMTB协议。

结果

在第一年,来自9个欧洲国家11家机构的19名患者在21次VMTB会议上进行了讨论。德国国家神经放射学参考中心在21次会议中的19次(91%)展示了MRI检查结果。所有参与国家的医生共回答了19份问卷。VMTB展示的主要原因是关于治疗的问题(79%)。各展示机构每年治疗的神经肿瘤儿科患者中位数为10名(5 - 150名)。所有医院都设有自己的机构肿瘤委员会。9个国家中有3个(33%)提供国家中央审查。除了一名出现意外临床恶化的患者外,所有患者至少部分遵循了建议。90%的人认为这些建议有帮助。所有参与者都愿意向同事推荐VMTB。56%的人报告称数据提供方面的技术问题是主要障碍。

结论

针对患有CNS肿瘤的儿科患者的欧洲VMTB是可行的,参与者认为它很有用。建议经常得到遵循。优化符合隐私的数据交换对于该形式的持续开展至关重要。

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