Does Your Primary Care Physician Know About Your BRCA1/BRCA2 Test Result?
There are a number of scenarios in which people may pursue BRCA1 and BRCA2 gene testing to determine whether they may have Hereditary Breast and Ovarian Cancer (HBOC) susceptibility, including a significant personal or family history of cancer or having a family member with a known BRCA1 or BRCA2 mutation.
The testing can occur in many different settings:
- At a tertiary (often academic) center that has a dedicated cancer genetics program, genetic counselors, and multi-specialty clinical support
- At a primary care practitioner’s office (with or without genetic counseling support)
- At an OB/GYN’s office (with or without genetic counseling support)
- Via virtual genetic counseling appointments with a provider over the phone
Regardless of the setting, it stands to reason that communication of that test report to one’s healthcare providers (if they were not involved in the testing) is a key first step in helping them to participate in optimally managing the patient’s cancer risk.
For this reason, a team from the MD Anderson Cancer Center (which would fall into the tertiary academic center category above), led by Susan Peterson, sought to characterize women’s communication of results from BRCA1 and BRCA2 testing performed at MD Anderson with their outside healthcare providers.
Basically, a questionnaire was mailed to 540 women who had been tested between 1997 and 2006 at MD Anderson. A total of 312 women returned the completed questionnaire. The majority (81 percent) had a prior cancer diagnosis. The BRCA1/2 testing results revealed a mutation in 27 percent, an uninformative negative result in 68 percent, and a true negative result in 5 percent. Key findings included the following:
The Majority of Women – But Not All – Shared Their Genetic Test Results With Their Outside Healthcare Providers
Overall, about 75 percent of women shared their genetic test results with at least one outside healthcare provider (71 percent of those with cancer did and 92 percent of those without cancer).
Overall The Women Were Most Likely to Share the Information with a Family Practitioner or Internist
Internists and Family Practice physicians were grouped together in this analysis (since they both perform primary care). 70 percent of both the participants with cancer and the participants without cancer shared their test results with an Internist or Family Practice physician. There was also a trend (not statistically significant) toward women without a cancer diagnosis being somewhat more likely to share their genetic testing results with an OB/GYN than with an Internist/Family Practitioner.
Types of Information Shared
Focusing on the women who shared at least some information, about 90 percent of these women shared their BRCA1/BRCA2 genetic testing results (it’s not clear whether this included sharing both verbally and more formally with a copy of the written report). Participants also reported sharing other types of information:
- Recommendations regarding cancer screening (50 percent)
- Recommendations regarding risk reducing surgery (32 percent)
- Brochures and other written materials from the genetic counselor (27 percent)
Conclusions and Final Thoughts
Overall, the majority of women tested for BRCA1 and BRCA2 mutations at MD Anderson shared their test results with their outside healthcare providers. As not all of these women can be followed in the future at MD Anderson (potentially for geographical, financial or other reasons), it stands to reason that communication of their test results to their outside healthcare providers is a very important step in the coordination of quality care for them in the community. Although the majority of women did share their results, there is still room for improvement.
And, if you were tested by someone other than your primary care physician or OB/GYN, you may wish to consider sharing your results with your doctor. This is a key step in working together to come up with an optimal and personalized management plan for you!
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Link to PubMed Abstract for Research Paper
Ready K, Arun BK, Schmeler KM, et al. Communication of BRCA1 and BRCA2 genetic test results to health care providers following genetic testing at a tertiary care center. Familial Cancer 2011 (electronically published online before print – June 17, 2011)