FORCE - Facing Our Risk of Cancer Empowered  University of South Florida

ABOUT Research Questions:
Can a patient-centered approach improve the uptake of genetic testing by men

Prioritization Score:
2.62

Feasibility:Medium

Question Source:

Input from community, message boards, and engagement survey

Overview

Like women, men can inherit BRCA mutations. NCCN guidelines recommend genetic counseling and testing for men with a personal or family history suggestive of HBOC. Men with BRCA mutations can pass their mutation on to sons or daughters. Each child has a 50% chance of inheriting their father's mutation. Men who inherit a BRCA mutation have an increased lifetime risk for certain cancers which is higher than the average man, but not as high as women with mutations. Despite this information, a small number of men who meet guidelines undergo genetic risk assessment. 

Recently there has been increased attention to research that men with BRCA mutations tend to develop a more aggressive form of prostate cancer than men without mutations, leading to increased interest in screening high-risk men for prostate cancer to detect it early. Additional there is interest in BRCA testing for men with aggressive prostate cancer and new clinical trials are looking at treatment with platinums and/or PARP inhibitors in men with mutations. 

Along with this emerging research, there is increasing interest in identifying and testing high-risk men for inherited mutations. 

Prioritization Score

Our Steering Committee and Research Work Group gave this study a prioritization score of 2.62 out of 4 points, meaning this is a medium-priority study. 

Feasibility Score

Our Executive Committee and research team considered the feasibility of developing this study through ABOUT as medium. 

Next Steps

  • Recommend rolling back to Assessment Phase.
    • Suggest building more of the evidence of benefits of BRCA testing for men for health plan and health system audience before conducting such an interventional study
    • Consider engagement survey to understand more about facilitators and barriers to
      1. testing and messaging preferences in men. 

Details of Prioritization Score

Our Steering Committee prioritizes questions based on four parameters on a scale from 1-4. Here are the average scores:

  • Community impact - 2.56
  • Community need/urgency - 2.57
  • Decision-making impact - 2.56
  • ABOUT Mission - 2.78

Details of Feasibility Score

Our Executive Committee scored feasibility as medium based on the following considerations:

  • There was agreement that it fits ABOUT's mission, and fits a comparative effectiveness model.
  • Some concern was expressed that insurance coverage for genetic counseling and testing in men is limited presenting a barrier to reaching men. However this concern is in part offset by the availability of low-cost, single site genetic testing, which is available through some labs for as little as $50.
  • There may be interest among biotech companies developing targeted agents for prostate cancer to reach men with BRCA mutations. 
  • Currently little is known about the best way to message men about BRCA testing, supporting the recommendation of starting with an engagement survey for men to learn more about their preferences and facilitators and barriers to genetic testing. 

References

Engagement Survey Results: Your Experiences Talking to Family Members About the Inherited Mutation in Your Family. August, 2016.

Kote-Jarai Z, Leongamornlert D, et. al. BRCA2 is a moderate penetrance gene contributing to young-onset prostate cancer: implications for genetic testing in prostate cancer patientsBr J Cancer, 105(8): p. 1230-1234. October, 2011.

Mitra AV, Bancroft EK, et. al. Targeted prostate cancer screening in men with mutations in BRCA1 and BRCA2 detects aggressive prostate cancer: preliminary analysis of the results of the IMPACT study.  British Journal of Urology International. Volume 107(1), p. 28-39. January, 2011.

Edwards SM, Evans DG, et. al. Prostate cancer in BRCA2 germline mutation carriers is associated with poorer prognosisBr J Cancer. 2010 Sep 27;103(6):p. 918-24. September, 2010.

Updated 09/11/16

This research will be relevant for:

Cancer survivors

Previvors/High risk people

Men

Women

People with a BRCA mutation

People with an ATM, PALB2, PTEN, or other mutation that increases cancer risk

People with Lynch Syndrome

People at high risk for breast cancer

People at high risk for ovarian cancer

People who are newly diagnosed with cancer

Woman submitting question

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ABOUT is a Patient-Powered Research Network in PCORnet®,  the National Patient-Centered Clinical Research Network, an initiative funded by the Patient-Centered Outcomes Research Institute (PCORI).

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