KNOW MORE is a new campaign designed by FORCE to help women diagnosed with ovarian, fallopian tube, or primary peritoneal cancers make informed decisions about genetic counseling and testing for inherited gene mutations.
We kicked off the campaign by launching a brief survey to better understand how women with ovarian and related cancers make decisions around genetic testing.
We are incredibly grateful to the more than 1,600 women with ovarian cancer, fallopian tube, and primary peritoneal cancers who completed our survey. Your responses will help us design better education and decision-making resources for people facing hereditary cancers.
Here are some of our preliminary findings:
Awareness about genetic testing was high
We know from research around the country that the message of genetic counseling and testing is still not reaching every ovarian cancer survivor. Despite this fact, almost all (99%) survey respondents had heard of genetic testing prior to taking our survey. This high awareness may be due to promotion of our survey largely through ovarian cancer organization partners who have been doing a great job of getting the word out about the link between ovarian cancer and genetics.
Why women with ovarian cancer pursue or forego genetic testing
A major goal of our survey was to discover the barriers that keep women with ovarian cancer from accessing genetic testing. When asked about various factors that influenced their decision to have genetic counseling or testing, doctor recommendation was a strong factor.
- Women whose health care teams recommended testing were more than twice as likely to have genetic testing as women whose doctors did not recommend testing.
- 79% of women who had genetic testing received recommendations from their health care providers.
- Only 24% of women who didn’t have genetic testing received a recommendation from their health care provider.
- Among women who had genetic testing, several factors seemed to play a role in their decision. As expected, most of the factors increased their likelihood of testing. Factors that most influenced the decision to undergo testing included:
- concern about family members’ cancer risk (90%).
- health care provider recommendation (76%).
- concern about their risk for other cancers (73%).
Among women who had genetic testing, few factors presented significant barriers. The three most commonly cited factors against testing in this group included:
- concern about cost of testing (17%).
- concern that insurance wouldn’t cover testing (17%).
- concern about insurance or employment discrimination (14%).
In women who did not undergo genetic testing, factors that most influenced the decision not to get testing included:
- concern about the cost of testing (31%).
- lack of insurance payment for testing (30%).
- concerns about employment or insurance discrimination (20%).
Similar to women who did have testing, women who were not tested reported that the following factors weighed in favor of testing:
- concern about family members’ cancer risk (51%)
- concern about risk for other cancers (40%)
Many women reported that they were offered testing soon after diagnosis, but were never offered testing again. Several of these women indicated that they were now interested in testing but didn’t know how to pursue it. Others mentioned that their doctors specifically recommended against genetic testing.
“I was offered appointment at diagnosis; had just had total hysterectomy, lost a kidney and was starting 6 cycles of chemotherapy I didn’t have the emotional strength to go at that time.”
“I wanted to, but my doc told me I don’t need it. Without my doctor’s support, my insurance would not pay for the testing.”
When asked about future plans for testing, respondents were equally divided between “considering testing,” “not considering testing,” and “uncertain.”
Satisfaction with their decision
Overall, most women were satisfied with their decision. However, women who had genetic testing were more likely to be satisfied with their decision than women who did not. This is not surprising, as many women expressed a desire to have testing, but reported cost of the test as a major barrier.
Importance of these results
National guidelines recommend that all women with ovarian cancer be offered the opportunity for genetic evaluation to learn if their cancer is hereditary. Our survey helps us to understand barriers that may prevent women from learning more about their ovarian cancer and ways to overcome these barriers.
- Importance of seeing a genetics expert:
Many women mentioned their subtype of cancer or lack of family history as reason why they passed on genetic testing. Importantly, many women with mutations may not have a strong family history of cancer. And although certain subtypes of ovarian, fallopian tube, and primary peritoneal cancers are more likely than others to be associated with an inherited genetic mutation, women with any type of ovarian cancer can carry an inherited mutation. A genetics expert can assess many different factors to help women understand the likelihood that their cancer was caused by an inherited mutation.
- Overcoming the cost or lack of insurance coverage for testing:
Due to advances in genetic testing, test results are more informative than before. The cost of testing is lower than ever, and most insurance companies pay for genetic counseling and testing for ovarian cancer survivors. Your doctor or genetic counselor can assist with insurance coverage for genetics services. FORCE resources to help you access coverage for care include:
- Need for up-to-date and ongoing information:
Many women mentioned that they were only offered genetic testing once in the course of their ovarian cancer journey. Some felt overwhelmed at the time, and expressed later interest, but did not know then how to pursue testing. If you had ovarian cancer and you wish to undergo genetic testing, ask your doctor to refer you for genetic counseling. If you need further support or guidance in the process, sign up for FORCE’s free Peer Navigator Program that will match you with a trained volunteer who can help.
- Education about how test results can affect medical options:
Many women said that they did not feel that genetic testing would change their care. It is important to understand the potential benefits of learning your genetic status including:
- women with ovarian cancer who test positive for a BRCA mutation may qualify for treatment with the FDA-approved targeted therapy, Lynparza.
- results may affect eligibility for certain clinical trials and research studies.
- results can help women understand their risk for breast cancer and other cancers to guide medical decisions about risk management.
- test results can help relatives understand their risk for cancer and take actions to stay healthy.
- Education about protections from genetic discrimination:
Fear of genetic discrimination was cited as a barrier by a large number of respondents. In the U.S. the Patient Protection and Affordable Care Act contains provisions that protect survivors and high risk people from discrimination. Additionally, GINA is a federal law that protects against genetic discrimination in health insurance and employment. However, there are some gaps in protection against discrimination in life, disability, and long-term care insurance.
- Education and outreach to health care providers:
Our survey also emphasized the important role played by health care providers in patient decision-making about genetic testing. Health care providers should include discussion of genetic counseling and testing at multiple points along the ovarian cancer treatment continuum, rather than only at the time of diagnosis or recurrence.
Visit our KNOW MORE campaign page for more results from our survey and resources for ovarian cancer survivors and their families.