Plain English summary Roger Wilson challenged cancer professionals in research and care to place the patient perspective and patient reported outcome measures centre stage. The ability to collect information from patients using structured questionnaires (known as Patient Reported Outcome Measures or PROMs) which ask about clinical issues (such as disease symptoms or treatment side-effects) as well as social, emotional and psychological issues has existed for 40 years. They provide a powerful way of working out whether an aspect of diagnosis or treatment for cancer is bringing real benefits to patients that can be measured using these structured questionnaires. When they are used, studies and cancer service developments are clearly constrained to focus on what matters to patients rather than, perhaps what matters to health service professionals or recent exciting but perhaps relatively unproven new technologies. There is good evidence that PROMs can contribute valuable inputs into the results of randomised controlled trials, clinical consultations and surveys of whole populations even at a national level. However, there is a great deal more work to be done on methodology and perhaps to change attitudes and cultures within the healthcare professions before they can deliver all of their potential to bring benefits to cancer patients. Abstract In response to Roger Wilson's challenge to place a patient-centred approach using Patient Reported Outcome Measures (PROMs) across all of the patient pathway, we have summarised progress over 40 years. We have critically evaluated what has been achieved to use patient reported outcomes in randomised controlled trials, in routine clinical practice and in population surveys. We conclude that there has been substantial scientific progress but that it has, arguably, been relatively slow. Barriers to placing PROMs centre stage in all of these areas of activity remain in methodology and to a degree in professional attitudes and culture. Active research programmes on methodology and closer working between healthcare professionals, cancer patients and patient advocates are the key requirements to speed up the use and application of PROMs and which should bring benefits to cancer patients and healthcare services.

中文翻译：

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将患者报告的结果作为癌症研究的中心阶段——为什么花了这么长时间？

简明的英语总结 Roger Wilson 向研究和护理领域的癌症专业人士提出了挑战，将患者的观点和患者报告的结果测量置于中心位置。使用结构化问卷（称为患者报告的结果测量或 PROM）从患者那里收集信息的能力已经存在了 40 年，该问卷询问临床问题（例如疾病症状或治疗副作用）以及社会、情感和心理问题. 它们提供了一种强有力的方法来确定癌症诊断或治疗的某个方面是否为患者带来了真正的益处，这些益处可以使用这些结构化问卷来衡量。当它们被使用时，研究和癌症服务的发展显然受限于关注对患者重要的事情，而不是，也许对卫生服务专业人士或最近令人兴奋但可能相对未经证实的新技术很重要。有充分的证据表明，即使在国家层面，PROM 也可以为随机对照试验、临床咨询和全人群调查的结果提供有价值的投入。然而，在方法论方面还有很多工作要做，也许还需要改变医疗保健行业的态度和文化，然后才能发挥所有潜力为癌症患者带来好处。摘要 为了应对 Roger Wilson 提出的挑战，即在所有患者路径中使用患者报告的结果测量 (PROM) 来采用以患者为中心的方法，我们总结了 40 年来的进展。我们严格评估了在随机对照试验、常规临床实践和人口调查中使用患者报告的结果所取得的成就。我们得出的结论是，科学取得了实质性进展，但可以说，进展相对缓慢。将 PROM 置于所有这些活动领域的中心舞台的障碍仍然存在于方法论以及专业态度和文化的一定程度上。积极的方法研究计划以及医疗保健专业人员、癌症患者和患者倡导者之间的密切合作是加快 PROM 使用和应用的关键要求，这应该会给癌症患者和医疗保健服务带来好处。我们得出的结论是，科学取得了实质性进展，但可以说，进展相对缓慢。将 PROM 置于所有这些活动领域的中心舞台的障碍仍然存在于方法论以及专业态度和文化的一定程度上。积极的方法研究计划以及医疗保健专业人员、癌症患者和患者倡导者之间的密切合作是加快 PROM 使用和应用的关键要求，这应该会给癌症患者和医疗保健服务带来好处。我们得出的结论是，科学取得了实质性进展，但可以说，进展相对缓慢。将 PROM 置于所有这些活动领域的中心舞台的障碍仍然存在于方法论以及专业态度和文化的一定程度上。积极的方法研究计划以及医疗保健专业人员、癌症患者和患者倡导者之间的密切合作是加快 PROM 使用和应用的关键要求，这应该会给癌症患者和医疗保健服务带来好处。