Survey reveals patient perceptions on biomarker testing in kidney cancer, suggesting education may improve trust and communication.
Background Recent advancements in kidney cancer research have focused on developing and validating new biomarkers for earlier diagnosis, improved prognosis, and personalized treatment strategies. Patient reception of biomarkers can be complex, influenced by factors like familiarity with the testing, health literacy, and communication with healthcare providers. Since 2018 through a biennial GPS, IKCC & its network has captured insights on the pt experience with diagnosis, management and the burden of kidney cancer to identify unmet needs & country variances to help guide development of action recommendations. We present here the findings related to patient perceptions on the use of biomarker testing to determine treatment selection in the future. Methods The survey, designed by an IKCC steering committee of patient advocates, medical experts and the Picker Institute, targeted KC patients and carers. It was cognitively tested, translated into 16 languages, and hosted online. Countries with historic response rates greater than 100 were provided an opportunity to ask five additional questions unique to their local needs of the respondents in their country. Data analysis used cross-tabulations. Results 2677 responses (2049 patients, 628 carers) from 46 countries were collected between September 24 and November 15, 2024. Respondents: 54% male; 80% aged 46–80; 62% ccRCC; 19% stage 4 at diagnosis; 52% were diagnosed in the past four years. Globally, when asked how they would feel about their doctor using the results of potential future biomarker tests to guide their treatment choice, 29% would trust biomarker testing, 22% have some reservations and questions but generally trust the process, 25% were concerned about relying only on a biomarker test and (23%, n = 552) did not know. These results vary significantly by country, but variances were noted by age, sex, and stage of disease. In the USA (n = 220) additional questions specific to US respondents were asked probing patient involvement and interest in personalized treatment strategies, circulating tumor cells and genomic testing. Circulating Tumor Cells: 13% were offered the test with 12% being tested, 63% were not offered testing but would like to have had it offered. Genomic Testing: 27% were offered the test and were tested, 53% were not offered testing but would like to have been. Conclusions IKCC GPS is the only worldwide KC survey measuring the experiences of people affected by KC and captured feedback from a record number of respondents. Most patients have some reservations about the use of biomarkers to guide treatment decisions in the future which can be addressed with appropriate education in the shared decision-making process. In the USA, most patients were receptive to circulating tumor cells and/or genomic testing. Patient education addressing the role of biomarkers is essential for clinical research studies and KC care in the future to ensure patients can make informed decisions. Questions about the willingness to pay for potential biomarker tests when available, and the bioethical concerns of positive germline genetic testing should be considered in future surveys.
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Jonasch et al. (2025) studied this question.
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