Fondazione Paola Gonzato-Rete Sarcoma ETS, Italy; Sarcoma Patient Advocacy Global Network (SPAGN), Germany.
Sarcoma Patient Advocacy Global Network (SPAGN), Germany.
J Cancer Policy. 2023 Jun;36:100413. doi: 10.1016/j.jcpo.2023.100413. Epub 2023 Feb 17.
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).
肌肉骨骼肉瘤是罕见的癌症，整个肉瘤家族在不同层面都带来了一些挑战，从医学知识到临床研究和决策制定。为了应对这些挑战，有必要在每个有助于改善治疗的领域的决策过程中纳入患者的观点，从医疗保健组织提供高质量的服务到研究问题。如果没有患者提供的信息来告知决策，那么当前以患者为中心的护理模式就没有意义，如果不是不道德的，那至少也是不合理的。在癌症研究和护理中把 PROMs 放在“中心舞台”上，可以建立真正的基于证据的倡导（EBA），从而增强基于证据的医学（EBM）。
