Counseling over the phone provides access to genetic testing for women in rural areas
Telephone counseling after genetic testing was found just as effective as in-person counseling in many respects, according to new study.
Angelina Jolie's decision to undergo a double mastectomy inspired many other women to seek genetic counseling. But for women in rural areas, undergoing genetic testing can impose its own set of barriers, such as multiple long trips for counseling, testing, and follow-up. New research by Anita Kinney, PhD, RN, now at the University of New Mexico Cancer Center in Albuquerque, offers some hope. The work was published in the Journal of the National Cancer Institute (2014; doi:10.1093/jnci/dju328).
The research team identified the 988 women in the study as being at-risk for hereditary breast or ovarian cancer or both. They gave each a personalized brochure and other materials about genetic testing. A board-certified genetic counselor reviewed the materials with each woman. The research team assigned approximately half of the women to meet with the genetic counselor in person; they assigned the other half to talk with the counselor over the phone. The women were surveyed 1 week after their initial counseling.
If a woman chose to have genetic testing after talking with the counselor, the researchers gave or mailed her a genetic testing kit. Each kit contained instructions explaining how to take a cheek-swab DNA sample and mail it for testing. Women who were tested also discussed their results with the genetic counselor and were surveyed 1 week after their test result counseling session. The researchers surveyed all the women again after 6 months.
More of the women who talked with a genetic counselor in person chose to undergo genetic testing than women who talked with a counselor over the phone. But the research team found no difference between the groups in measures of anxiety, distress, quality of life, and knowledge gained. They also found no difference in how the women felt about the counseling sessions.
The researchers suggest that more women who received in-person counseling chose to undergo genetic testing because they could give their DNA sample and send it for testing immediately. Women counseled on the phone may have changed their minds because they had to wait for the testing kit to arrive in the mail and then had to drive to a mailing location to send the kit. The researchers suggest further study to understand how women make these decisions.
But the study showed that genetic counseling over the phone was just as helpful as in-person counseling. Over-the-phone counseling gave women the information they needed to make a decision about genetic testing. And it explained the results of the genetic testing for urban and rural women.
“This research shows that using the telephone is a viable alternative to in-person genetic counseling,” Kinney said. “Using the phone, we can effectively increase women's access to genetic counseling services. And that can help them make informed and life-saving decisions for their health no matter where they live.”