Abstract：
Musculoskeletal sarcomas are rare cancers that as the whole family of sarcomas pose several challenges at different levels, ranging from medical knowledge to clinical research and policymaking. Addressing these challenges, necessarily calls for the inclusion of patient perspective inside the decision-making processes of every area that contributes to treatment improvement, from the provision of high-quality services by healthcare organisations to research issues. Without patient-provided inputs to inform decisions, the current paradigm of patient-centred care makes no sense and sounds at the least irrational if not unethical. Putting PROMs on \"centre stage\" in cancer research and care, could allow to build a truly Evidence Based Advocacy (EBA) and therefore to empower Evidence Based Medicine (EBM).
摘要：
肌肉骨骼肉瘤是罕见的癌症，因为整个肉瘤家族在不同的层面上提出了一些挑战，从医学知识到临床研究和决策。应对这些挑战，必然要求将患者观点纳入有助于改善治疗的每个领域的决策过程，从医疗机构提供优质服务到研究问题。没有患者提供的输入来告知决策，当前的以患者为中心的护理模式没有任何意义，听起来至少是不合理的，即使不是不道德的。将PROM放在癌症研究和护理的“中心阶段”，可以允许建立一个真正的循证倡导(EBA)，从而授权循证医学(EBM)。
