66Patient perceptions of biomarker testing in kidney cancer (KC) from the international kidney cancer coalition (IKCC) global patient survey (GPS)
Bibliographic record
Abstract
Abstract 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.
Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.
How this classification was reachedexpand
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.001 | 0.002 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.000 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.001 | 0.000 |
| Research integrity | 0.000 | 0.000 |
| Insufficient payload (model declined to judge) | 0.001 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one teacher head, not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".