Exploring Prostate Cancer Patients’ Interest and Preferences for Receiving Genetic Risk Information About Cancer Aggressiveness

Abstract

The number of cases of aggressive prostate cancer is increasing. Differentiating between aggressive and indolent cases has resulted in increased difficulty for the physician and patient to decide on the best treatment option. Due to this challenge, efforts are underway to profile genetic risk for prostate cancer aggressiveness, which may help physicians and patients at risk for developing aggressive prostate cancer to select an appropriate treatment option. This study explores patients’ interest in receiving genetic results, preference for how genetic risk information should be communicated, and willingness to share results with adult male first-degree relatives (FDRs). A nine-item survey was adapted to assess their beliefs and attitudes about genetic testing for prostate cancer aggressiveness. In addition, participants ( n = 50) responded to hypothetical scenarios and questions associated with perceived importance of risk disclosure, preferences for receiving genetic risk information, and sharing of results with FDRs. As the hypothetical risk estimate for aggressive prostate cancer increased, patients’ willingness to receive genetic risk information increased. This study found that most patients preferred receiving genetic risk education in the form of a DVD (76%), one-page informational sheet (75%), or educational booklet (70%). Almost all patients (98%) reported that they would be willing to share their test results with FDRs. The results of this study highlight prostate cancer patients’ desire to receive and share genetic risk information. Future research should focus on assessing the long-term benefits of receiving genetic information for prostate cancer patients and implications of sharing this information with FDRs.

Racial Differences in Trust and Risk Disclosure Preferences Among Older Registered Research Volunteers Screened for Prodromal Synucleinopathies

“…A prior study in prostate cancer suggested that Black men may be more inclined to learn their genetic testing results even when risk was lower whereas all participants favored risk disclosure when risk was higher. (Roy et al, 2020) Our survey’s findings are consistent with this possibility. A previous PD interventional study that focused on improving community-physician referrals failed to yield an improvement in the racial and ethnic make-up of a trial’s cohort.…”

‘I Don't Like Uncertainty, I Like to Know’: How and why uveal melanoma patients consent to life expectancy prognostication

“…Although treatments for metastatic melanoma have limited medical benefits, patients can feel supported and cared for within screening programmes 35 . Similarly, some may feel that providing tumour samples provides benefits to others by supporting research 21 . Nonetheless, in the absence of mortality or morbidity benefits of treatment, decision‐making approaches equipoise; a preference‐based choice where the risk of distress and the risks of the procedure should be considered against benefits 19,22 .…”

“…Research has focussed on prognostic disclosure, patient awareness, postprognosis decision‐making and patient distress, 17 , 18 , 19 , 20 rather than patients' decisions to undergo testing and to receive a prognosis. Qualitative studies suggest that people want prognoses to inform procedural choices and to resolve uncertainty, 18 , 21 , 22 often after a medical or family recommendation. 23 Patients also see prognostication as communication with healthcare professionals that, done well, is imbued with caring and emotional support that has value to patients.…”

“… 35 Similarly, some may feel that providing tumour samples provides benefits to others by supporting research. 21 Nonetheless, in the absence of mortality or morbidity benefits of treatment, decision‐making approaches equipoise; a preference‐based choice where the risk of distress and the risks of the procedure should be considered against benefits. 19 , 22 The substantial risks underscore the importance of making ‘well‐considered’ decisions; defined as decisions likely to generate outcomes that reflect and further an individual's values and priorities.…”

“…5,7,8,9,19,21,29, 74, 92, 95), with some viewing it almost as a positive event because it allowed the possibility of coping which they felt was denied to them by uncertainty: 'If you don't get it done you're going to be living in fear. It's like, if you do get it done and it is bad news you can fight it.…”