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Study: Genetic counseling by phone or face-to-face

Summary

Results presented at the 2017 American Psychological Association’s annual meeting showed genetic counseling by telephone is as “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. This presentation is an update on research published in 2014. (11/29/17)

Genetic counseling by phone or face-to-face

Relevance

This article is most relevant for People referred to a genetic counselor or those considering genetic testing

Relevance Rating Details

Relevance: Medium-High

Strength of Science: Medium-High

Research Timeline: Post Approval

Media Ratings

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How we rated the media

Who covered this study?

STAT

Genetic counseling works as well over the phone as in person, study finds
This article rates 3.0 out of 5 stars

mHealth Intelligence

Telehealth counseling study shows value against in-person visits
This article rates 2.5 out of 5 stars

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Contents

At a glance In-depth
Findings                      Limitations                                        
Guidelines Resources
Questions for your doctor                                                  


STUDY AT A GLANCE

This study is about:

Long-term psychological and social outcomes from genetic counseling by phone compared to in-person counseling.

Background:

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.

Study findings:

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:

  • distress
  • quality of life
  • knowledge
  • decisional conflict 
  • satisfaction 

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.

Share your thoughts on this XRAY review by taking our brief survey.  

posted 11/29/17
 

References:

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.


Disclosure

FORCE receives funding from industry sponsors, including companies that manufacture cancer drugs, tests and devices. All XRAYS articles are written independently of any sponsor and are reviewed by members of our Scientific Advisory Board prior to publication to assure scientific integrity.

This article is relevant for:

People referred to a genetic counselor or those considering genetic testing

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IN DEPTH REVIEW OF RESEARCH

Study background:

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. 

Study findings

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."

Limitations:

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.

Conclusions:

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.

Share your thoughts on this XRAYS article by taking our brief survey.

Posted 11/29/17

Expert Guidelines
Expert Guidelines

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  
  • 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 
    • Lobular breast cancer and a family history of diffuse gastric cancer
    • For treatment decisions for people with breast cancer or people with early , breast cancer who are at high-risk for recurrence 
    • Testing of your tumor shows a mutation in a gene that is associated with

OR 

  • 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 
    • prostate cancer or  cancer that is high-risk or very-high-risk group. 

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. 

Updated: 07/28/2023

Questions To Ask Your Doctor
Questions To Ask Your Doctor

  • 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?

Open Clinical Trials
Open Clinical Trials

The following clinical trials include genetic counseling and testing. 

Other genetic counseling or testing studies may be found here.

 

Updated: 02/29/2024

Peer Support
Peer Support

FORCE offers many peer support programs for people with inherited mutations. 

Updated: 08/06/2022

Find Experts
Find Experts

The following resources can help you locate a genetics expert near you or via telehealth.

Finding genetics experts

  • The National Society of Genetic Counselors website has a search tool for finding a genetic counselor by specialty and location or via telehealth. 
  • 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. 
  • Gene-Screen is a third-party genetic counseling group that can help educate, support and order testing for patients and their families. 
  • JScreen is a national program from 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. 

Related experts

Genetics clinics

Other ways to find experts

Updated: 07/21/2023

Related Resources
Related Resources

The following organizations have resources related to genetic counseling and testing:

Updated: 11/13/2023

Who covered this study?

STAT

Genetic counseling works as well over the phone as in person, study finds This article rates 3.0 out of 5 stars

mHealth Intelligence

Telehealth counseling study shows value against in-person visits This article rates 2.5 out of 5 stars

How we rated the media

Back to XRAY Home

Article Rating Details

STAT News: Genetic counseling works as well over the phone as in person, study finds
Rating: 3.0 Stars

  • This was a well-written media article covering the original research study and 12 month follow-up data presented in 2017.
  • This was a clear and easy to read media article.
  • No sources outside of the research study were interviewed for this media article.
  • Not all limitations of the research study were discussed in this media article.

mHealth Intelligence: Telehealth counseling study shows value against in-person visits
Rating: 2.5 Stars

  • The title of this article is incorrect and misleading.  The results of the study show that psychological and social outcomes are similar for patients who receive genetic counseling by phone compared to in-person counseling. They do not show that telephone counseling is more valuable than in-person counseling as the title suggests.
  • The only person interviewed for the article was the senior researcher.  No outside sources or conflicting opinions were presented.
  • While the article is well-written and easy to read, there is a glaring typo in the lede-breast is misspelled as beast. 
  • The article outlines other areas where telehealth counseling has been of benefit.
  • No limitations of the study were discussed.

Study Rating Details

Relevance: Medium-High

  • This study examines the effectiveness of telephone and in-person genetic counseling for women with hereditary breast and ovarian cancer risk.  
  • This work is particularly useful for women who have not been diagnosed with cancer but are at increased risk as compared to the general population.  
  • While the intent of the study was to be generalizable, it is not clear if the results would reflect the responses of women without increased risk of cancer, people at increased risk for other types of cancers, or men. 

Strength of Science: Medium-High

  • This was a well-designed study with a large number of participants.  
  • This new research are the results of a 12-month follow-up to research published earlier.  
  • The outcomes studies were cancer-specific distress, genetic testing distress, quality of life, satisfaction with decision, and risk management behaviors. However, there are other outcomes that this study did not evaluate. 
  • Despite several limitations, this study supports the conclusions of others in 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. 
  • The finding that telephone delivery of genetic counseling does not result in long-term adverse outcomes compared to in-person counseling indicate that telephone counseling is a reliable method for the successful delivery of genetic counseling. Importantly, these results may extend to other genetic diseases and may allow patients easier and less costly access to reliable genetic services. 

Research Timeline: Post-Approval

  • Genetic counseling by telephone is currently available.