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

ABOUT Research Questions:
Measuring the quality of information and the amount of misinformation doctors are giving their patients about cancer risk assessment and risk management.

Prioritization Score:
3.52

Feasibility:Low

Question Source:

ABOUT public forum at FORCE Conference

Overview

Genetics is a rapidly advancing area of science and medicine. Genetic testing has become more complicated with the discovery of new genes that affect cancer risk. Guidelines recommend that people speak with trained experts known as genetic counselors before undergoing genetic testing. As the cost of genetic testing has decreased, more people are turning to health care providers without expertise in genetics for information about genetic testing and medical options for managing risk. There is a lack of research on the quality of the information and the amount of misinformation that health care providers are sharing with patients with regards to cancer genetic testing, and the best ways to assure that health care providers are following recommended national guidelines. 

Prioritization Score

Our Steering Committee and Research Work Group gave this study a prioritization score
of 3.52 out of 4 points, meaning this is a high-priority study.

Feasibility Score

Our Executive Committee and research team considered the feasibility of this
study through ABOUT as No->Low. 

Next Steps

  • Not recommended for promotion to Planning Phase
  • Consider for collaboration if opportunity presents. Note: if you are a researcher studying this topic and would like to collaborate with us, please contact us at: aboutnetwork@facingourrisk.org

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 - 3.67
  • Community need/urgency - 3.67
  • Decision-making impact - 3.33
  • ABOUT Mission - 3.40

Details of Feasibility Score

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

  • To conduct this study, you would need to query both patients on the information that they are receiving and their health care providers on the information delivered. 
  • Assessing quality of information doctors provide patients requires enrolling both doctors and patients to assess information delivered versus information received. Traditionally challenging to enroll providers into studies like this. 
  • ABOUT is not set up to enroll health care providers for this type of study design.
  • Other groups are conducting research on this question. 

References

Cragun D, Scherr C, Camperlengo L, Vadaparampil ST, Pal T. Evolution of Hereditary Breast Cancer Genetic Services: Are Changes Reflected in the Knowledge and Clinical Practices of Florida Providers? Genet Test Mol Biomarkers. 2016 Aug 15. [Epub ahead of print]

Cohn J, Blazey W, Tegay D, Harper B, Koehler S, Laurent B, Chan V, Jung M, Krishnamachari B. Physician Risk Assessment Knowledge Regarding BRCA Genetics TestingJournal of Cancer Education. September 2015, Volume 30, Issue 3, pp 573–579.

 

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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