Informational and Logistical Needs of Women with BRCA Mutations Post-Results Disclosure
Capstone Project Committee: Kimberly Banks, MS, CGC, Sonja Eubanks, MS, CGC, David Margileth, MD
Genetic testing for mutations in the BRCA1 and BRCA2 breast and ovarian cancer associated genes is widely available in the United States. These mutations greatly increase the risk of early onset breast cancer (50-80% lifetime risk) and ovarian cancer (15-45% lifetime risk). As such, there are several medical management and surveillance recommendations that are given to women who carry a mutation to achieve early cancer detection and/or prevention. For women whose genetic testing is facilitated by a cancer genetics specialist, they typically return to their managing/treating physicians for coordination of the high-risk management recommendations. At present there is limited information regarding how easy it is for women to comply with the high risk recommendations or what informational support needs they have post-results disclosure. The goal of the project was to assess the post-results disclosure informational and logistical needs of women who have a BRCA mutation to better support this population. The participants completed a questionnaire that was developed specifically for this study at the beginning of the focus group session. The focus group discussion immediately followed completion of the questionnaire. The focus group was audio taped in order to allow for data analysis at a later date, not as part of this project. The results indicated that the participants were receiving appropriate medical management. They felt that the specialized physicians that they discussed their results with were very knowledgeable about the recommendations. However, the more general physicians varied greatly on the knowledge of the high-risk medical management recommendations. Overall, it appears that individuals who receive genetic counseling with their BRCA testing are aware of the recommendations and are able to carry them out. Individuals who have had cancer are more likely to be familiar with the specialized physicians and go to them for recommendations and management. General practitioners are, in general, less knowledgeable about the management recommendations for high-risk individuals. Genetic counselors can act as advocates for their patients, providing education for practitioners in their area.
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