ArticleBMJ open2013
The value of personalised risk information: a qualitative study of the perceptions of patients with prostate cancer.
Article in BMJ open, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 papers, 2 of them syntheses that pooled it.
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Who cites it
21 citing papers in PubMed, 2 syntheses or guidelines pooled it, 37 citations in OpenAlex.
- Qualitative studies on men with prostate cancer: a systematic meta-synthesis.International journal of qualitative studies on health and well-being · 2025Pooled it
- Supportive care needs of men with prostate cancer: A systematic review update.European journal of cancer care · 2022Pooled it
- Informed decision making among first-degree relatives of prostate cancer survivors: a pilot randomized trial.Contemporary clinical trials · 2014Trial
- Ethical Perspectives in Renal Genetic Testing and Counseling.Advances in kidney disease and health · 2026Review
- Reviews for multimorbidity risk in people with inflammatory conditions: a qualitative study.BJGP open · 2024Article
- Testing Explanations for Skepticism of Personalized Risk Information.Medical decision making : an international journal of the Society for Medical Decision Making · 2023Article
- Taking shared decision making for prostate cancer to the next level: Requirements for a Dutch treatment decision aid with personalized risks on side effects.Internet interventions · 2023Article
- Commentary: 20 years online with "Your Disease Risk".Cancer causes & control : CCC · 2021Article
- Communicating tailored risk information of cancer treatment side effects: Only words or also numbers?BMC medical informatics and decision making · 2020Article
- Article
- Cause or Effect? The Role of Prognostic Uncertainty in the Fear of Cancer Recurrence.Frontiers in psychology · 2020Article
- Prostate Cancer Patients' Understanding of the Gleason Scoring System: Implications for Shared Decision-Making.Journal of cancer education : the official journal of the American Association for Cancer Education · 2019Article
- What does risk of future cancer mean to breast cancer patients?Breast cancer research and treatment · 2019Article
- How Uncertainty Influences Lay People's Attitudes and Risk Perceptions Concerning Predictive Genetic Testing and Risk Communication.Frontiers in genetics · 2019Article
- Combining risk communication strategies to simultaneously convey the risks of four diseases associated with physical inactivity to socio-demographically diverse populations.Journal of behavioral medicine · 2018Article
- Using an Internet-Based Breast Cancer Risk Assessment Tool to Improve Social-Cognitive Precursors of Physical Activity.Medical decision making : an international journal of the Society for Medical Decision Making · 2017Article
- Factors Affecting Physicians' Intentions to Communicate Personalized Prognostic Information to Cancer Patients at the End of Life: An Experimental Vignette Study.Medical decision making : an international journal of the Society for Medical Decision Making · 2016Article
- General Practitioners' Experiences of, and Responses to, Uncertainty in Prostate Cancer Screening: Insights from a Qualitative Study.PloS one · 2016Article
- My Lived Experiences Are More Important Than Your Probabilities: The Role of Individualized Risk Estimates for Decision Making about Participation in the Study of Tamoxifen and Raloxifene (STAR).Medical decision making : an international journal of the Society for Medical Decision Making · 2015Article
- Decision-making Processes among Prostate Cancer Survivors with Rising PSA Levels: Results from a Qualitative Analysis.Medical decision making : an international journal of the Society for Medical Decision Making · 2015Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveTo explore the experiences of patients with prostate cancer with risk information and their perceptions of the value of personalised risk information in treatment decisions.
designA qualitative study was conducted using focus groups. Semistructured interviews explored participants' experiences with using risk information, and their perceptions of the potential value of personalised risk information produced by clinical prediction models.
participantsEnglish-speaking patients, ages 54-82, diagnosed with prostate cancer within the past 3 years, residing in rural and non-rural geographic locations in Maine (USA), and attending prostate cancer patient support groups.
setting6 focus groups were conducted with 27 patients; separate groups were held for patients with low-risk, medium-risk and high-risk disease defined by National Comprehensive Cancer Network guidelines.
resultsSeveral participants reported receiving risk information that was imprecise rather than precise, qualitative rather than quantitative, indirect rather than direct and focused on biomarker values rather than clinical outcomes. Some participants felt that personalised risk information could be useful in helping them make better informed decisions, but expressed scepticism about its value. Many participants favoured decision-making strategies that were heuristic-based and intuitive rather than risk-based and deliberative, and perceived other forms of evidence-emotions, recommendations of trusted physicians, personal narratives-as more reliable and valuable in treatment decisions.
conclusionsPatients with prostate cancer appear to have little experience using personalised risk information, may favour heuristic-based over risk-based decision-making strategies and may perceive personalised risk information as less valuable than other types of evidence. These decision-making approaches and perceptions represent potential barriers to the clinical use of personalised risk information. Overcoming these barriers will require providing patients with greater exposure to risk information, education about the nature and value of personalised risk information and training in deliberative decision-making strategies. More research is needed to confirm these findings and address these needs.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.