PDF(Pubmed)
Abstract：
BACKGROUND: Typically, researchers and clinicians determine the agenda in sarcoma research. However, patient involvement can have a meaningful impact on research. Therefore, the Patient-Powered Research Network (PPRN) of the Sarcoma Patient Advocacy Global Network (SPAGN) set up a Priority Setting Partnership (PSP). The primary objective of this partnership is to identify priorities for research and patient advocacy topics.
METHODS: In the first phase of this PSP, including 264 sarcoma patients and carers from all over the world, 23 research topics regarding sarcomas and 15 patient advocacy topics were identified using an online survey. In the second phase, participants were asked to fill in a top five and a top three of research and patient advocacy topics, respectively. Additionally, sociodemographic characteristics and sarcoma characteristics were collected. Social media channels, local national patient advocacy groups and the SPAGN website were used to distribute the survey.
RESULTS: In total, 671 patients (75%) and carers (25%) participated in this survey. The five highest ranked research topics were related to causes of sarcoma (43%), prognosis and risk of recurrence (40%), specific subtypes of sarcoma (33%), the role of immunotherapy, targeted therapy and combined therapy (30%), and hereditary aspects (30%). The three highest ranked patient advocacy topics were improving the diagnostic process of sarcoma (39%), access to tumor DNA analysis (37%) and establishing an international sarcoma registry (37%).
CONCLUSIONS: This sarcoma PSP has identified priorities for research and patient advocacy, offering guidance for researchers, assisting funding agencies with assessing project relevance and empowering patient advocates to represent the needs of patients and carers.
METHODS: In the first phase of this PSP, including 264 sarcoma patients and carers from all over the world, 23 research topics regarding sarcomas and 15 patient advocacy topics were identified using an online survey. In the second phase, participants were asked to fill in a top five and a top three of research and patient advocacy topics, respectively. Additionally, sociodemographic characteristics and sarcoma characteristics were collected. Social media channels, local national patient advocacy groups and the SPAGN website were used to distribute the survey.
RESULTS: In total, 671 patients (75%) and carers (25%) participated in this survey. The five highest ranked research topics were related to causes of sarcoma (43%), prognosis and risk of recurrence (40%), specific subtypes of sarcoma (33%), the role of immunotherapy, targeted therapy and combined therapy (30%), and hereditary aspects (30%). The three highest ranked patient advocacy topics were improving the diagnostic process of sarcoma (39%), access to tumor DNA analysis (37%) and establishing an international sarcoma registry (37%).
CONCLUSIONS: This sarcoma PSP has identified priorities for research and patient advocacy, offering guidance for researchers, assisting funding agencies with assessing project relevance and empowering patient advocates to represent the needs of patients and carers.
摘要：
背景：通常，研究人员和临床医生确定了肉瘤研究的议程.然而,患者参与可以对研究产生有意义的影响.因此,肉瘤患者倡导全球网络（SPAGN）的患者驱动研究网络（PPRN）建立了优先级设定合作伙伴关系（PSP）。这种伙伴关系的主要目标是确定研究和患者宣传主题的优先事项。
方法：在此PSP的第一阶段，包括来自世界各地的264名肉瘤患者和护理人员，使用在线调查确定了23个关于肉瘤的研究主题和15个患者倡导主题。在第二阶段,参与者被要求填写前五名和前三名的研究和患者宣传主题，分别。此外,收集社会人口统计学特征和肉瘤特征。社交媒体渠道,使用当地的全国患者倡导团体和SPAGN网站分发调查.
结果：总计，671名患者（75％）和护理人员（25％）参加了这项调查。排名最高的五个研究课题与肉瘤的原因有关（43％），预后和复发风险（40％），肉瘤的特定亚型（33%），免疫治疗的作用，靶向治疗和联合治疗（30％），和遗传方面(30%)。排名最高的三个患者宣传主题是改善肉瘤的诊断过程（39％），获得肿瘤DNA分析(37%)和建立国际肉瘤登记(37%)。
结论：该肉瘤PSP已确定了研究和患者倡导的优先事项，为研究人员提供指导，协助资助机构评估项目相关性，并授权患者倡导者代表患者和护理人员的需求。
方法：在此PSP的第一阶段，包括来自世界各地的264名肉瘤患者和护理人员，使用在线调查确定了23个关于肉瘤的研究主题和15个患者倡导主题。在第二阶段,参与者被要求填写前五名和前三名的研究和患者宣传主题，分别。此外,收集社会人口统计学特征和肉瘤特征。社交媒体渠道,使用当地的全国患者倡导团体和SPAGN网站分发调查.
结果：总计，671名患者（75％）和护理人员（25％）参加了这项调查。排名最高的五个研究课题与肉瘤的原因有关（43％），预后和复发风险（40％），肉瘤的特定亚型（33%），免疫治疗的作用，靶向治疗和联合治疗（30％），和遗传方面(30%)。排名最高的三个患者宣传主题是改善肉瘤的诊断过程（39％），获得肿瘤DNA分析(37%)和建立国际肉瘤登记(37%)。
结论：该肉瘤PSP已确定了研究和患者倡导的优先事项，为研究人员提供指导，协助资助机构评估项目相关性，并授权患者倡导者代表患者和护理人员的需求。
