Study: Genetic counseling by phone or face-to-face
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This study is about:
Long-term psychological and social outcomes from genetic counseling by phone compared to in-person counseling.
Research has shown the benefits of genetic counseling for people undergoing genetic testing for cancer risk. Traditionally genetic counseling has involved a face-to-face appointment. Experts have explored new models for delivering genetic counseling remotely, including offering this service by telephone. The researchers involved in this study previously compared outcomes 2 weeks and 3 months post-counseling for women who received genetic counseling by telephone versus in-person. This new research reports the results of the 12 month follow-up for this study.
Why is this study important?
As genetic testing becomes more common, demand for in-person genetic counseling will exceed the resources genetic counselors have to provide information and support to patients. Telephone genetic counseling allows genetic counselors to deliver needed information in a timely manner, is often cheaper, and provides a way to serve patients who cannot travel to a genetic counselor.
Researchers wanted to make sure that telephone genetic counseling is safe and effective in long-term psychological and social outcomes compared to traditional in-person counseling for women at risk for hereditary breast and ovarian cancer.
At the 12-month follow-up, women counseled by telephone showed clear evidence of similar outcomes compared to women receiving in-person counseling on five outcomes measured:
- quality of life
- decisional conflict
Because these results suggest that telephone counseling is safe and effective for women at high risk of hereditary breast and ovarian cancer, the authors encourage providers to consider telemedicine genetic counseling as an alternative to in-person counseling.
What does this mean for me?
While the idea of delivering bad news related to one’s health via phone has been a subject of debate, this study shows that a carefully controlled telephone counseling program provides similar psychological and social outcomes for patients compared to in-personal counseling. Genetic counseling by telephone may increase access to a genetic counselor (which may take months to schedule) and may cost less than in-person counseling.
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Schwartz MD, Valdimarsdottir HB, Peshkin BN, Mandelblatt J, Nusbaum R, Huang A-T, Chang Y, Graves K, Isaacs C, Wood M, McKinnon W, Garber J, McCormick S, Kinney AY, Luta G, Kelleher S, Leventhal K-G, Vegella O, Tong A and King L. Noninferiority Trial of Telephone Versus In-Person Genetic Counseling for Hereditary Breast and Ovarian Cancer. Journal of Clinical Oncology. 2014. 32:7, 618-626.
Interrante MK, Segal H, Peshkin BN, Valdimarsdottir HB, Nusbaum R, Similuk M, DeMarco T, Hooker G, Graves K, Isaacs C, Wood M, McKinnon W, Garber J, McCormick S, Heinzmann J, Kinney AY and Schwartz MD. In-Person Genetic Counseling for Hereditary Breast and Ovarian Cancer: A 12-Month Follow-Up. JNCI Cancer Spectrum. 2017. 1:1.
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IN DEPTH REVIEW OF RESEARCH
Telephone delivery of genetic counseling is an alternative to in-person genetic counseling because it may extend the reach of genetic counseling services. Previous reports have established that telephone counseling is as effective as in-person counseling for both short-term psychosocial and decision-making outcomes. In the current study, researchers examined the long-term impact of telephone counseling (TC) vs in-person counseling (usual care - UC).
Researchers of this study wanted to know:
Is genetic counseling by telephone as safe and effective as in-person counseling for patients at high risk of breast and ovarian cancer?
Study design and population
A multi-site, , trial conducted from 2004-2012 enrolled 669 participants (women age 21 to 85 who did not have a newly diagnosed or cancer and lived within a study site area). Participants were randomly assigned to usual care of in-person genetic counseling (UC; n = 334) or telephone counseling (TC; n = 335). UC participants received in-person pre- and post-test counseling; TC participants completed all genetic counseling by telephone.
Primary outcomes were patient-reported satisfaction with genetic testing decisions, distress, quality of life, knowledge, and decisional conflict satisfaction compared to women receiving in-person counseling. Outcomes were measured by a trained research assistant who called participants to administer a verbal consent and complete follow-up surveys two weeks after counseling (pretest disclosure) and three, six, and 12 months after random assignment (TC or UC). 512 participants completed the 12-month follow-up.
At the 2017 American Psychological Association’s annual meeting, Marc Schwartz, of Georgetown University’s Lombardi Comprehensive Cancer Center, presented results of the 12 month follow-up: In-Person Genetic Counseling for Hereditary Breast and Ovarian Cancer: A 12-Month Follow-Up to his 2014 study: “ Noninferiority Trial of Telephone Versus In-Person Genetic Counseling for Hereditary Breast and Ovarian Cancer”. This was one of the first studies to show comparable outcomes," said Schwartz, “That's important not only for these at-risk women, but also because "as testing becomes more popular for other cancers, there's just not enough capacity to see (everyone) in person."
At the 12 month follow-up researchers noted the following study limitations:
- TC yielded lower rates of genetic testing compared with UC.
- Study of TC in more diverse populations is needed given the low rate of minority participants in this study.
- Researchers did not collect data on those who declined to participate in TC which prevented them from understanding what factors contributed to willingness to participate in TC.
- The complexity of genetic counseling has increased since this trial. Whether telephone delivery is effective for more complex genetic testing is unknown.
- The evaluation of risk management outcomes relied on self-report measures and could be improved in future studies with verification of clinical records.
There is now strong evidence from multiple studies that patients who receive genetic counseling over the telephone have short- and long-term outcomes that are no worse than patients who receive in-person genetic counseling. In addition, there is no evidence that telephone counseling yields lower rates of uptake of recommended risk-reducing surgery or breast cancer screening among mutation carriers. However, these are not the only important outcomes of genetic counseling. For example, this study did not determine whether or not patients felt they received enough information about the pros and cons of genetic testing to make an informed decision nor did this study evaluate whether or not patients felt they received adequate psychological support by phone. However, the results of this long-term study support the conclusion that TC is safe and effective and may be considered for patients who cannot afford or cannot travel to genetic counseling centers.
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The National Comprehensive Cancer Network has guidelines on who should undergo genetic counseling and testing. If you have been diagnosed with breast cancer, you should speak with a genetics expert about genetic testing if any of the following apply to you:
- You have a blood relative who has tested positive for an inherited mutation
- You have any of the following:
- Breast cancer at age 50 or younger
- Male breast cancer at any age
- Ovarian cancer at any age
- at any age
- Two separate breast cancer diagnoses
- Eastern European Jewish ancestry and breast cancer at any age
- breast cancer
- Testing of your tumor shows a mutation in a gene that is associated with
- breast cancer and high risk for recurrence
- Lobular breast cancer and a family history of diffuse gastric cancer
- You have one or more close family members who have had:
- Young-onset or rare cancers
- Breast cancer at age 50 or younger
- Male breast cancer, ovarian cancer, pancreatic cancer, or cancer at any age
- Two separate cancer diagnoses
- cancer at age 55 or younger or prostate cancer
The American Society of Breast Cancer Surgeons (ASBrS) released guidelines in 2019 that recommend all women diagnosed with breast cancer have access to genetic testing for inherited mutations in breast cancer genes.
If you are uncertain whether you meet the guidelines above and you are interested in or considering genetic testing, you should speak with a cancer genetics expert.
- What are the pros and cons of genetic counseling by phone versus seeing a genetics counselor in-person?
- Can you provide me with the names of genetic counselors who provide this service by telephone?
- Will my insurance cover genetic counseling by telephone?
Below are clinical trials that include genetic counseling and testing.
- NCT02665195: Registry Of MultiPlex Testing (PROMPT). PROMPT is an online research registry. The goal of PROMPT is to help researchers to better understand the risks that are linked to mutations in less well-studied genes.
- NCT04245176: Genetic Testing for All Breast Cancer Patients (GET FACTS). This study looks at the impact of a novel genetic counseling method on surgical decisions in people with newly diagnosed breast cancer. This study involves genetic counseling about risk.
- NCT02620852: WISDOM Study: Women Informed to Screen Depending on Measures of Risk offers women age 40-74 the opportunity to undergo risk assessment and genetic testing in order to determine the best breast screening options based on their situation.
- Enhancing Genetic Risk Assessment in Underserved Blacks and Latinas at Risk of Hereditary Breast Cancer. This study will test how well educational materials increase the use of knowledge about risk.
- NCT04476654: Improving Uptake of Genetic Cancer Risk Assessment in African American Women-Video. This study looks at the usefulness of intervention with a culturally-tailored video to improve uptake of genetic counseling in Black women who are at increased risk of .
Other genetic counseling or testing studies may be found here.
FORCE offers many peer support programs for people with inherited mutations.
- Our Message Boards allow people to connect with others who share their situation. Once registered, you can post on the Diagnosed With Cancer board to connect with other people who have been diagnosed.
- Our Peer Navigation Program will match you with a volunteer who shares your mutation and situation.
- Our moderated, private Facebook group allows you to connect with other community members 24/7.
- Check out our virtual and in-person support meeting calendar.
- Join one of our Zoom community group meetings.
Health care providers who are specially trained in genetics can help you more clearly understand your risk for . The following resources can help you locate a genetics expert in your area.
- The National Society of Genetic Counselor website offers a searchable directory for finding a genetic counselor by state and specialty. To find a genetic counselor who specializes in cancer genetics, choose "cancer" under the options "Area of Practice/Specialization."
- InformedDNA is a network of board-certified genetic counselors providing this service by telephone. They can also help you find a qualified expert in your area for face-to-face genetic counseling if that is your preference.
- JScreen is a national program based out of Emory University that provides low-cost at-home genetic counseling and testing with financial assistance available.
- Grey Genetics provides access to genetic counselors who offer genetic counseling by telephone.
- The Genetic Support Foundation offers genetic counseling with board-certified genetic counselors.
- FORCE's toll-free helpline at: 866-288-RISK, ext. 704 will connect you with a volunteer board-certified genetic counselor who can answer general questions about genetic testing and cancer and help you find a genetics expert near you.
- FORCE Peer Navigator Program will match you with a volunteer who has undergone genetic counseling and can help you navigate resources to find a genetic counselor near you.
- Ask your doctor for a referral to a genetics expert.
Who covered this study?
Genetic counseling works as well over the phone as in person, study finds This article rates 3.0 out of 5 stars
Telehealth counseling study shows value against in-person visits This article rates 2.5 out of 5 stars