The management of sarcomas in specialist centers delivers significant benefits. In much of the world, specialists are not available, and the development of expertise is identified as a major need. However, the terms ‘specialist’ or ‘expert’ center are rarely defined. Our objective is to offer a definition for patient advocates and a tool for healthcare providers to underpin improving the care of people with sarcoma. SPAGN developed a discussion paper for a workshop at the SPAGN 2023 Conference, attended by 75 delegates. A presentation to the Connective Tissue Oncology Society (CTOS) and further discussion led to this paper. Core Principles were identified that underlie specialist sarcoma care. The primary Principle is the multi-disciplinary team discussing every patient, at first diagnosis and during treatment. Principles for optimal sarcoma management include accurate diagnosis followed by safe, high-quality treatment, with curative intent. These Principles are supplemented by Features describing areas of healthcare, professional involvement, and service provision and identifying further research and development needs. These allow for variations because of national or local policies and budgets. We propose the term ‘Sarcoma Intelligent Specialist Network’ to recognize expertise wherever it is found in the world. This provides a base for further discussion and local refinement.
在专科中心治疗肉瘤具有显著优势。然而，在世界许多地区，专科医生资源匮乏，专业能力建设被视为一项迫切需求。但“专科”或“专家”中心的概念鲜有明确定义。本研究旨在为患者权益倡导者提供明确定义，并为医疗机构提供改善肉瘤患者护理质量的实践工具。国际肉瘤患者倡导网络（SPAGN）在2023年会议期间举办了专题研讨会，75名代表参与讨论并形成讨论文件。通过向结缔组织肿瘤学会（CTOS）汇报及后续研讨，最终形成本论文。 研究确立了专科肉瘤诊疗的核心原则，首要原则是在初诊及治疗全程由多学科团队对每位患者进行联合会诊。优化肉瘤管理的原则包括：在明确诊断后实施以治愈为目标的安全、高质量治疗。这些原则辅以具体实施特征，涵盖医疗领域、专业参与及服务提供等方面，并指明未来研发需求。实施方案可根据国家或地方政策及预算进行调整。 我们提出“肉瘤智慧专科网络”概念，以认可全球范围内的专业诊疗能力。这为后续讨论及本土化改进奠定了理论基础。
What Is a Sarcoma ‘Specialist Center’? Multidisciplinary Research Finds an Answer
肿瘤(癌症)患者之家