Women at risk of carrying a BRCA1 or BRCA2 gene mutation who had genetic counseling over the phone benefitted as much as women who had counseling in person, a study found. This finding could mean easier access to the service at a more affordable cost.
As our understanding of hereditary risk of breast cancer grows, more people seek genetic counseling to help decide whether they should be tested for mutations, or errors, in genes linked to the disease. Mutations on the BRCA1 and 2 genes are among the most common tested for. Yet, national guidelines now recommend that people with strong family histories of breast or ovarian cancer have genetic counseling before testing.
Despite the growing need for genetic counseling, some people may have trouble getting it because they live far from a center offering the service or are faced with other obstacles, like cost. Phone counseling may help remove these barriers, but experts worry it may not be as educational or supportive as in-person counseling.
Researchers designed this noninferiority trial to find out whether phone counseling is at least as good as in-person. Noninferiority trials compare a new treatment method or service to one currently used to find out if the new one is not worse than the current.
A group of 669 women, aged 21 – 65 years, who had at least a 10 percent risk of carrying a BRCA gene mutation were randomly assigned to receive one of two forms of counseling:
- 335 had genetic counseling by phone, which included receiving printed materials by mail explaining what was discussed during the call and a letter with testing guidelines and recommendations. If they decided to test, they gave blood samples at their doctor’s office, a local lab or at the study site.
- 334 had standard, in-person genetic counseling, which included a letter with testing guidelines and recommendations. If they decided to test, they gave blood samples at the end of their first counseling session.
The women completed an interview about themselves and their cancer history before they were assigned to a group. Follow-up interviews were done 2 weeks after genetic counseling began, and then 3, 6 and 12 months from the date the women were assigned to a trial group.
Participants answered questions about
- their knowledge of BRCA genetic testing
- their level of doubt about whether to be tested
- how satisfied they were with their counseling
- how much or little cancer-related stress they felt
- their quality of life
In addition to surveying participants, the research team also estimated the average cost of in-person and phone counseling, including data on average wages, cost of travel to appointments, parking, and phone charges.
After reviewing surveys, researchers found that the women in the phone counseling group responded similarly to those in the in-person counseling group. Survey answers were the same at both 2 weeks and 3 months after being assigned.
Analysis of the cost data showed phone counseling, on average, cost nearly 114 dollars less per participant than in-person counseling. People from rural areas saved the most.
The structure of this study may not reflect the use of phone counseling by the average user. Participants in the trial did not need to pay for phone counseling, so cost was not an issue. In general, health insurers don’t cover phone counseling. In this way, it is possible for phone counseling to cost more for the average user than in-person counseling covered by health insurance.
In addition, before the start of the trial many women who preferred in-person counseling chose not to participate. Because of this the groups studied were made of women who were open to or curious about phone counseling from the start.
It is also important to note that while genetic counseling can be carried out by phone, steps that follow – such as meeting with a doctor with knowledge of genetics to create a screening plan – must happen in person.
What This Means for You
Genetic counseling given by phone can be as effective as in-person counseling, meaning over time phone service may become more common and help lower costs. In turn, more people may be able to have counseling sessions than in the past.
If you do not live near a genetic counseling center, counseling by phone may allow you to learn more about your breast cancer risk without needing to travel far. It may also help you if you have a very busy schedule, are a caregiver, or have other restrictions that make traveling to one or more appointments challenging.
To learn more, read our Guide to Understanding Genetics and Family Risk Assessment.
Schwartz, M, Valdimarsdottir, H, Peshkin, B, Mandelblatt, J, Nusbaum, R. Randomized noninferiority trial of telephone versus in-person genetic counseling for hereditary breast and ovarian cancer.Journal of Clinical Oncology. 2014;doi: 10.1200/JCO.2013.51.3226