Our understanding of patient experiences with prostate cancer testing for diagnosis and surveillance is limited. The aim of this study was to collaborate with patients and clinicians to understand their lived experience and unmet needs around the early detection, diagnosis and monitoring (active surveillance) of prostate cancer. Two focus groups were held with patients (n = 20) and healthcare professionals (n = 16), to identify the main challenges in prostate cancer detection, diagnosis, and monitoring. This information formed the basis of an online questionnaire for broader dissemination. A total of 1138 analyzable responses were obtained from people tested for prostate cancer (69% tested positive) in Europe and the US. Only 29 healthcare professionals completed the survey. Almost one-third of people reported knowing very little/nothing about prostate cancer prior to testing. Prior disease awareness was significantly higher in those who tested negative ( < .0001). Most respondents (n = 857; 75%) felt informed about the steps involved in testing. Receiving written information was a key factor; 91% of those who felt uninformed were not given any written information. Overall, most people felt “satisfied” with the typical prostate cancer tests: PSA, DRE, mpMRI, and biopsy. However, dissatisfaction for prostate biopsy (12%) was almost double that of other tests ( < .0001). Most patients understood why each test was done, and felt that their results and next steps were clearly explained to them; though PSA scored lowest in all of these fields. Apart from PSA, test satisfaction was lower when used repeatedly for surveillance, compared to once-off detection/diagnosis. Greater public awareness and education around prostate cancer, as well as clear and accessible written information for patients at the beginning of their cancer journey is needed. Further research is needed into alternative, less invasive tests, particularly when used repeatedly in the surveillance population.

中文翻译：

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IMPROVER（让患有前列腺癌的男性参与研究）：评估患者的测试、诊断和监测体验

我们对用于诊断和监测的前列腺癌检测的患者体验的了解是有限的。本研究的目的是与患者和临床医生合作，了解他们的生活经历以及前列腺癌早期检测、诊断和监测（主动监测）方面未满足的需求。由患者 (n = 20) 和医疗保健专业人员 (n = 16) 组成的两个焦点小组，以确定前列腺癌检测、诊断和监测中的主要挑战。这些信息构成了更广泛传播的在线调查问卷的基础。从欧洲和美国接受前列腺癌检测的人（69% 检测呈阳性）中总共获得了 1138 份可分析的反应。只有 29 名医疗保健专业人员完成了调查。近三分之一的人表示在检测前对前列腺癌知之甚少/一无所知。检测结果呈阴性 (< .0001) 的患者的既往疾病认知度明显更高。大多数受访者（n = 857；75%）认为自己了解测试所涉及的步骤。接收书面信息是一个关键因素； 91% 感到不知情的人没有获得任何书面信息。总体而言，大多数人对典型的前列腺癌测试感到“满意”：PSA、DRE、mpMRI 和活检。然而，对前列腺活检的不满 (12%) 几乎是其他测试的两倍 (< .0001)。大多数患者了解为什么要进行每项测试，并认为他们的结果和后续步骤已向他们清楚地解释；尽管 PSA 在所有这些领域得分最低。除 PSA 外，与一次性检测/诊断相比，重复用于监测时的测试满意度较低。需要提高公众对前列腺癌的认识和教育，以及在患者癌症之旅开始时为患者提供清晰易懂的书面信息。需要进一步研究替代性、侵入性较小的测试，特别是在监测人群中重复使用时。