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 relatives

Prioritization Score:
3.08

Feasibility:Medium-High

Question Source:

Emerging research; FORCE community

Overview

Blood relatives of people with BRCA mutations meet national guidelines for testing. Health care providers are limited in their ability to reach out to relatives of patients due to HIPAA, putting increased pressure on patients who test positive to contact their relatives. Cascade testing – where one member who tests positive for a mutation notifies relatives – is considered an effective way to improve uptake. Currently about 30% of people who meet national guidelines undergo testing for BRCA. This proposal would use our PaGeMe rubric to develop patient generated messaging to help people speak to relatives about genetic testing and navigate them through the testing process.

Prioritization Score

Our Steering Committee and Research Work Group gave this study a prioritization
score of 3.08 out of 4 points, meaning this is a high-priority study. This study ranked 3rd 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 medium-high, and suggested promoting it to the planning phase.  

Next Steps

Recommend promotion to Planning Phase

  • Consideration of study aims, design, eligibility, number of participants and partners/collaborators needed
  • Design schema

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 - 3.13
  • Community need/urgency - 2.93
  • Decision-making impact - 3.00
  • ABOUT Mission - 3.27

Details of Feasibility Score

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

  • Fits with ABOUT Mission
  • Fits a comparative effectiveness model – so could be ideal for ABOUT research
  • Addresses a gap
  • CDC and NCI are both interested in the topic

References

Engagement Survey Results: Your Experiences Talking to Family Members About the Inherited Mutation in Your Family

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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