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Telephone Counseling for Breast Cancer Risk

Phones expand reach and access to cancer genetic counseling and testing

More patients are becoming aware that their inherited genes may increase their risk for breast cancer and ovarian cancer, thanks to recent celebrity news stories and advocacy campaigns. At the same time, routine clinical care propels toward personalizing treatments and incorporates cancer genetic testing more frequently. Guidelines from the United States Preventive Services Task Force and the National Comprehensive Cancer Network recommend that women at high risk for breast cancer and ovarian cancer should get genetic counseling.

Women facing high breast cancer and ovarian cancer risk include those diagnosed with breast cancer at age 50 years and younger; those diagnosed with ovarian cancer at age 60 and younger; those diagnosed with triple-negative tumors; and, those with a family history strongly suggestive of hereditary breast and ovarian cancer. These trends have significantly increased demand for cancer genetic counseling and testing services.

Cancer genetic counseling requires specialized skills and knowledge to judge someone's hereditary risk for breast and ovarian cancer. Providers often don't have such expertise, making access to a trained and licensed cancer genetic specialist important for many women. Women in rural or underserved areas face additional geographic and cost barriers that can make this access difficult. Our study explored the possibility of using telephones to extend access to cancer genetic counselors.1woman on phone

Studying the Telephone's Potential
We wanted to show how telephone counseling compared with in-person counseling. We were particularly interested in outcomes concerning how women felt: how much anxiety and cancer-related distress they experienced; how much control they exerted over their screening decisions; a, how informed they felt about their cancer risk and medical recommendations; and, if telephone counseling was cost effective for them. Our prior work had shown that telephone counseling was noninferior to in-person counseling over the short-term. Our most recent study looked at longer-term outcomes.

Noninferiority studies compare standard care with novel treatments. Researchers use them when placebo-controlled studies would be unethical, as in the case of breast cancer screening and treatment. Noninferior studies must show that the novel or alternative treatment is efficacious, that it produces statistically efficacious results compared with the standard treatment, and that it provides additional advantages.

Our study enrolled nearly one thousand rural and urban Utah women between 25 and 74 years old who were at higher risk for breast and ovarian cancer. All enrollees met the criteria for a referral for genetic counseling. Enrollees spoke English, had access to a telephone and could travel to in-person counseling. None of the women had genetic testing or counseling prior to our study.

Enrolling At-Risk Subjects
We sent all the women teaching materials and letters about their cancer risk through the mail. With their permission, we sent letters to their doctors about their risk and how to manage it.

The 495 women who were randomly assigned to receive in-person counseling traveled to one of 14 clinics. There, her cancer genetic counselor used a standardized protocol, an educational brochure and visual aids. If a woman chose to get genetic testing, her counselor gave her the option of providing a blood sample at their appointment or taking a BRCA 1/2 buccal test kit home. Each woman received post-test counseling from the cancer genetic counselor she saw previously.

SEE ALSO: Breast Cancer Awareness Month

The other 493 women in the study were assigned to receive telephone counseling. We sent them sealed envelopes containing the same print materials and instructed them to open the envelopes at the time of their telephone session. The cancer genetic counselor used the standardized protocol for the telephone counseling. If a woman in this group chose testing, we arranged for a blood draw or mailed her the BRCA 1/2 buccal test kit. Women in this group, too, received post-test counseling over the telephone from the cancer genetic counselor she spoke with previously.

To minimize bias, data collectors did not know to which group the women were assigned. They collected patient-derived data via telephone, internet or mail. Data collectors surveyed the women at the beginning of their involvement in the study (baseline), one week pre-test counseling, one week post-test counseling, six months and one year. Our most recent research focuses on the one-year outcomes.

An Important Alternative
Our study showed that at one year, the women who received telephone counseling benefited similarly to the women who received in-person counseling. The survey questioned the women about their anxiety level, cancer-specific distress, quality of physical health, quality of mental health, conflict over their decision, and regret over their decision. The one-year surveys showed that the women in both groups scored similarly in their responses and that their anxiety, cancer-specific distress and physical and mental health changed little from their baseline scores. We previously reported that telephone counseling is more cost-effective than in-person counseling, particularly for rural dwellers.

Fewer of the telephone-counseled women chose to undergo genetic testing. By one year from baseline, 27.9% of telephone-counseled women underwent genetic testing, compared with 37.3% of the in-personal counseled women. Interestingly, a higher percentage of rural women in both groups underwent genetic testing. 

 

In-Person Counseling

Telephone Counseling

All women

37.3 %

27.9%

Rural women

41.3%

38.7%

Urban women

36.6%

25.9%

Table 1. Percent of women who underwent genetic testing by one year after latest intervention.

Vital Information via Phone
This study provides important evidence that cancer genetic counselors can provide important health information to women over the telephone as safely and effectively as they can in person. Our results did not show how telephone counseling compares with in-person counseling for women who tested positive for BRCA 1/2 or who had other mutations or who sought testing for other genes. But, our results showed that other subgroups of women, such as those in rural areas and those choosing to forgo testing, did not experience any adverse effects from receiving cancer genetic counseling over the telephone.

These results agree with the results we obtained at the six-month mark. Telephone counseling offers a viable choice to receive cancer genetic counseling. We hope the results of this study will help to make cancer genetic counseling services more widely available, even in rural states like Utah and New Mexico. And we hope that these results will help to effect policy changes to support women in overcoming the geographic, cost and other barriers that keep them from potentially life-saving cancer risk information.

Reference    

1. Kinney, A. et. al. "Randomized Noninferiority Trial of Telephone Delivery of BRCA1/2 Genetic Counseling Compared to In-person Counseling: One-Year Follow-up." Journal of Clincal Oncology. June 20, 2016. http://jco.ascopubs.org.

 Anita Y. Kinney is a professor in the Department of Internal Medicine, Division of Epidemiology and Biostatistics, and is The Carolyn R. Surface Endowed Chair in Cancer Control and Population Sciences at The University of New Mexico School of Medicine. She serves as associate director for cancer control and population Sciences at the UNM Comprehensive Cancer Center. Michele W. Sequeira is the editorial specialist | Research at The University of New Mexico Comprehensive Cancer Center.

 


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