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

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, randomized, trial conducted from 2004-2012 enrolled 669 participants (women age 21 to 85 who did not have a newly diagnosed or metastatic 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: “Randomized 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.

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Posted 11/29/17