Genetic services for men: The preferences of men with a family history of prostate cancer

Abstract

Purpose: Men have a lower uptake of genetic services than women; however, the specific needs and preferences of men at risk of genetic conditions other than hereditary breast ovarian cancer are not known. We ascertain the information preferences of men with a family history of prostate cancer. Methods: Unaffected men and their partners were administered a written questionnaire. Results: Responses were received from 280 men (response rate: 59.2%) and 174 partners (response rate: 74%). Most men (59.6%) reported having insufficient information about their risk and wanted further information about personal risk (93.2%) and risk management (93.6%). Strikingly, 56.3% preferred to receive information related only to positive outcomes. Urologists were the preferred source of information, but there was considerable interest in a multidisciplinary service approach significantly associated with the number of affected relatives (odds ratio ϭ 1.94, P Ͻ .002). Partners' level of concern was not associated with interest in multidisciplinary services, satisfaction with information, or support received. Conclusions: Delivering services to men at risk will require a multifaceted approach by primary care providers and specialists. Challenges include meeting men's expectations in the face of uncertain medical knowledge, engaging those at high risk in multidisciplinary services, and delivering tailored information to those at lower risk. Men have a lower uptake of genetic services 1,2 and genetic testing 3 than women and may have different responses to coping with and disclosing genetic information. 3,4 Despite these differences, men's preferences for genetic service delivery have not been sought or identified. In cancer genetics particularly, the delivery of genetic services has been largely influenced by the experiences of women with, or at risk of developing, hereditary breast-ovarian cancer. 5-7 One retrospective study examined the needs of men with BRCA1 and BRCA2 mutations and found them generally satisfied with genetic counseling, but this did not ascertain preferences. It cannot be assumed that men at risk of other hereditary cancer predispositions have the same needs as men with mutations predisposing predominantly to breast cancer. Understanding men's preferences for the delivery of cancer genetic information becomes important when considering services for men with a family history of prostate cancer. These men have a risk of developing prostate cancer that increases with the number of affected relatives and a decreasing age of diagnosis. 8 -11 An autosomal dominant form (hereditary prostate cancer) has been defined, 8 and 2% to 3% of all prostate cancer cases meet these criteria, with up to one third of cases diagnosed before 60 years possibly caused by dominantly inherited mutations in susceptibility genes. 12 Nonetheless, the molecular basis of susceptibility remains unclear. 13 Currently, it is uncommon for men with a family history suggestive of hereditary prostate cancer to be seen in cancer genetics clinics. In Aus...

Attendance of men at the familial cancer clinic: what they value from the consultation

“…It may be anticipated that families who are enrolled on the kConFab database have a higher level of awareness of their genetic risk and access to genetic information that may not be readily available to the broader high-risk community. These findings are in contrast to those of Gaff et al, 37 where 34% of men with a family history of prostate cancer reported that they only wanted to receive good information. However, we framed our question differently asking whether men wanted to receive all information good or bad, whereas Gaff et al asked whether men wished to receive good or bad information.…”

“…These results are similar to those reported in our previous study of the expectations of women from high-risk breast cancer, 28 to other studies in women from high-risk breast cancer families, 38,39 and two studies of men at high risk for prostate cancer. 37,40 In line with our hypotheses, higher levels of cancer-related anxiety (intrusion and avoidance) predicted a higher value placed by men on receiving both information and emotional support. However, it should be noted that the cancer-related anxiety levels in these men were not high, with less than a dozen men scoring above the clinically significant cut-off.…”

The beliefs, and reported and intended behaviors of unaffected men in response to their family history of prostate cancer

“…As reported previously, 25,26 a total of 504 questionnaires were mailed out; 23 packages were returned to sender, and eight men were found to be deceased. Of the remaining 473 eligible participants, 59% (51% in the family study and 73% in the self-selected sample) returned completed questionnaires.…”

“…However, should such services be established, it is important to have some insight into the beliefs men might hold about their options before attending a service 37 and actions they may have already undertaken to reduce their risk. We have previously reported that the greatest need of men with a family history of prostate cancer was to obtain information about risk management 25 and that most are managing their risk by undergoing surveillance. 26 In this study, we extend these data by considering other modifications men have made to their health behavior, finding that 39% reported having made changes in response to their family history alone.…”

“…This study was undertaken as part of a larger study that also assessed the accuracy and completeness of reporting family history of prostate cancer, 24 information and clinical service needs, 25 and surveillance practices. 26 The study was approved by the ethics committees of Melbourne Health and The Cancer Council Victoria.…”