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

ABOUT Research Questions:
How does hysterectomy vs. no hysterectomy during risk reducing salpingo-oophorectomy affect outcomes for women with BRCA mutations?

Prioritization Score:
3.21

Feasibility:High

Question Source:

Emerging research and engagement survey

Overview

National guidelines (NCCN) recommend risk-reducing removal of the ovaries and tubes for women with a BRCA1 or BRCA2 mutation between the ages of 35-40 and when childbearing is complete. However there are no guidelines and little research on patient outcomes to guide decision-making around whether or not women should remove their uterus at the same time. Based on our ABOUT engagement survey, about ½ of women with mutations remove their uterus and the other half do not. This study would look at the long-term outcomes and satisfaction level for women with mutations with and without hysterectomy to determine which option leads to the best outcomes for which patients. 

Prioritization Score

Our Steering Committee and Research Work Group gave this study a prioritization score of 3.21 out of 4 points, meaning this is a high-priority study. This study ranked 2nd in
priority scores among the first group of study questions.

Feasibility Score

Our Executive Committee and research team considered the feasibility of this
study as high, meaning it has been promoted to the planning phase.

Next Steps

Recommend promotion to Planning Phase

  • Consideration of study aims and design
  • Consideration of eligibility and number of participants needed
  • Consideration of partners/collaborators needed – discussion with PCORnet networks
  • Identify possible funding sources

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 - 3.00
  • Community need/urgency - 2.87
  • Decision-making impact - 3.60
  • ABOUT Mission - 3.36

Details of Feasibility Score

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

  • Fits with ABOUT Mission
  • Fits a comparative effectiveness research model – so could be ideal for ABOUT research
  • Addresses a gap
  • No known funding source, but possibilities include PCORI, NIH or AHRQ

References

Shu CA, Pike MC, Kauff ND, et. al. Uterine Cancer After Risk-Reducing Salpingo-oophorectomy Without Hysterectomy in Women With BRCA MutationsJAMA Oncol. 2016 Nov 1;2(11):1434-1440.

Engagement Survey Results: How Do Women Decide Whether Or Not To Remove Their Uterus During BSO?

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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