Angelina Jolie’s decision to undergo a double mastectomy inspired many other women to seek genetic counseling, too. But for women in rural areas, getting a genetic test can impose its own set of barriers, like multiple long trips for counseling, testing and follow-up. New research by Anita Kinney, PhD, RN, offers some hope. The research showed that telephone counseling was just as effective as in-person counseling in many respects. Dr. Kinney, now at the University of New Mexico Cancer Center, and her colleagues published the work in the Journal of the National Cancer Institute.
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 about 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. They surveyed the women one week after 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 one week after their test result counseling session. The researchers surveyed all the women again after six months.
More of the women who talked with a genetic counselor in person chose to get a genetic test 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,” Dr. Kinney says. “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.”
About Anita Kinney PhD, RN
Anita Kinney, PhD, RN, is a Professor in the Department of Internal Medicine, Division of Epidemiology, at the UNM School of Medicine and is The Carolyn R. Surface Endowed Chair in Cancer Control and Population Sciences. Dr. Kinney serves as Associate Director for Population Sciences and as Cancer Control Research Program Co-Leader at the UNM Cancer Center. She trained at the University of Pennsylvania, UT-Houston School of Public Health, the University of North Carolina-Chapel Hill, and the National Cancer Institute. Dr. Kinney is an internationally recognized and highly acclaimed expert in cancer prevention and public health. Her research focuses on understanding variations in cancer risk and outcomes, in diverse populations and communities and developing effective strategies to prevention and control cancer.
“Expanding Access to BRCA1/2 Genetic Counseling with Telephone Delivery: A Cluster Randomized Trial” was published in the December 2014 edition of Journal of the National Cancer Institute (http://jnci.oxfordjournals.org/content/106/12). Authors are: Anita Y. Kinney, Karin M. Butler, Marc D. Schwartz, Jeanne S. Mandelblatt, Kenneth M. Boucher, Lisa M. Pappas, Amanda Gammon, Wendy Kohlmann, Sandra L. Edwards, Antoinette M. Stroup, Saundra S. Buys, Kristina G. Flores, Rebecca A. Campo.
This study was supported by the National Cancer Institute. Please see the paper for the full funding support of this work.
About the UNM Cancer Center
The UNM Cancer Center is the Official Cancer Center of New Mexico and the only National Cancer Institute-designated Cancer Center in the state. One of just 68 premier NCI-Designated Cancer Centers nationwide, the UNM Cancer Center is recognized for its scientific excellence, contributions to cancer research, the delivery of high quality, state of the art cancer diagnosis and treatment to all New Mexicans, and its community outreach programs statewide. Annual federal and private funding of over $77 million supports the UNM Cancer Center’s research programs. The UNM Cancer Center treats more than 60 percent of the adults and virtually all of the children in New Mexico affected by cancer, from every county in the state. It is home to New Mexico’s largest team of board-certified oncology physicians and research scientists, representing every cancer specialty and hailing from prestigious institutions such as M.D. Anderson Cancer Center, Johns Hopkins University, and the Mayo Clinic. Through its partnership with Memorial Medical Center in Las Cruces, the UNM Cancer Center brings world-class cancer care to the southern part of the state; its collaborative clinical programs in Santa Fe and Farmington serve northern New Mexico and it is developing new collaborative programs in Alamogordo and in Roswell/Carlsbad. The UNM Cancer Center also supports several community outreach programs to make cancer screening, diagnosis and treatment available to every New Mexican. Learn more at www.cancer.unm.edu.