Visceral Sarcoma Unit, City of Health and Science, University of Turin, Italy.
Department of Surgery, Institute of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
Eur J Surg Oncol. 2019 Jan;45(1):19-21. doi: 10.1016/j.ejso.2017.12.012. Epub 2018 Feb 1.
There are several suggestions that centralization of care improves outcome for rare cancers, particularly when optimal treatment requires complex surgery or high-technology radiotherapy equipment. Diagnosis and treatment in reference centers are expected to be more accurate because they benefit from large numbers of cases discussed in a multidisciplinary tumor board with a well-run pathway. However, centralization is sometimes moderately perceived by oncologists as a solution to be endorsed for rare cancer patients; disadvantages of centralization are the need for patients to move and the risk of a longer waiting list, with discomfort and possible negative effects on outcome. It is difficult to find single experts on rare cancers: all the more it will be difficult to find a multidisciplinary panel of experts, and the role of the surgeon is to be a functional part of it. On the other side, from a surgical point of view, the quality of the initial management of many rare cancers directly impacts the final outcome; surgery of rare cancers may not necessarily be more demanding than the average from a technical point of view, but the lack of cultural knowledge about the disease can well lead to inappropriateness even in the lack of major technical challenges. Care for rare cancer patients must be organized in pathways that cover the patient's journey from their point of view rather than that of the healthcare system, and pathways must follow the best evidence on diagnosis, treatment and follow-up.
有一些建议表明,集中治疗可以改善罕见癌症的治疗效果,尤其是在最佳治疗需要复杂的手术或高科技放疗设备时。参考中心的诊断和治疗预计会更准确,因为它们受益于多学科肿瘤委员会讨论大量病例,并具有良好的管理途径。然而,集中治疗有时被肿瘤学家视为一种为罕见癌症患者提供的解决方案;集中治疗的缺点是患者需要转移,并且存在更长的等待名单的风险,这可能会给患者带来不适,并对治疗结果产生负面影响。找到罕见癌症的单一专家是困难的:更难找到一个多学科的专家小组,而外科医生的作用是成为其中的一个功能性部分。另一方面,从外科的角度来看,许多罕见癌症的初始管理质量直接影响最终结果;从技术角度来看,罕见癌症的手术不一定比一般手术要求更高,但由于缺乏对疾病的文化知识,即使在没有重大技术挑战的情况下,也可能导致不适当的治疗。为罕见癌症患者提供的护理必须通过覆盖患者从自身角度出发的治疗路径来组织,而不是从医疗保健系统的角度出发,并且这些路径必须遵循关于诊断、治疗和随访的最佳证据。