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

ABOUT Research Questions:
Can Patient Generated Messaging (PaGeMe) improve genetic services uptake in men?

Prioritization Score:
2.62

Feasibility:Medium

Question Source:

Community based

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.  

Emerging research shows that men with mutations are at increased risk for aggressive prostate cancer and may benefit from increased screening. Clinical trials are looking at treatment with platinums and/or PARP inhibitors for men with mutations and prostate cancer. For this reason, there is increasing interest in identifying men with mutations. 

This research would look at whether messaging developed and delivered by patients improves uptake of genetic counseling and testing by men who meet national guidelines.

Prioritization Score

Our Steering Committee and Research Work Group originally gave this question a prioritization score of 2.56 out of 4 points, meaning this is a medium-priority study. After gathering additional information, the question was reprioritized with a score of 2.61.

Feasibility Score

Our Executive Committee and research team initially considered the feasibility of this study as low-medium. After additional assessment they scored feasibility as medium.  

Next Steps

Recommend roll 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. The IMPACT Study is a large ongoing study in the United Kingdom looking at outcomes with PSA screening in men with mutations. If this study shows improved outcomes it could increase urgency for identifying men with mutations. 
  • Consider engagement survey to understand more about facilitators and barriers to 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 - 2.56
  • 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: challenges in reaching men about genetic testing, lack of research to demonstrate that men who undergo genetic testing and interventions have better outcomes, and concerns about the lack of funding mechanisms for such a study. However, the emerging research on prostate cancer and PARP inhibitors increased enthusiasm for answering this research question. 

References

Pritchard C, Mateo J, Nelson, P, et. al. Inherited DNA-Repair Gene Mutations in Men with Metastatic Prostate Cancer. N Engl J Med 2016 Nov; 375:443-453

Bancroft EK, Page EC, Eeles RA, et. al. Targeted prostate cancer screening in BRCA1 and BRCA2 mutation carriers: results from the initial screening round of the IMPACT studyEur Urol. 2014 Sep; 66(3): 489–499.

Pal T, Vadaparampil S, Kim J, Xu Y, Friedman S, Narod SA, Metcalfe K. Interest of individuals from BRCA families to participate in research studies focused on male BRCA carriers. Fam Cancer. 2013 Dec;12(4):615-9.

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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