Is It Time to Embrace Telephone Genetic Counseling in the Oncology Setting

Genetic counseling for hereditary breast/ovarian cancer (HBOC) and BRCA1/2 genetic testing is routine in some settings but difficult to access in others. The content of an initial cancer genetic counseling session includes many elements and typically takes an hour or more. Deeply rooted in the practice of genetic counseling is attention to the emotions of patients that arise when discussing concerns about one’s own health, the illnesses of family members, and worries about passing disease risks on to children. In person, the genetic counselor can use visual cues to assess emotional needs, but what happens when genetic counseling is conducted by telephone? Do patients experience more distress? In the article that accompanies this editorial, Schwartz et al present timely and compelling data demonstrating that telephone genetic counseling is not inferior to standard in-person genetic counseling. Women referred for BRCA1/2 genetic counseling were randomly assigned to either standard genetic counseling or telephone genetic counseling, and the results showed that both groups benefited equally from genetic counseling, with similar increases in knowledge and decreases in decisional conflict and distress. These findings provide persuasive evidence that genetic counseling is a beneficial component of the BRCA1/2 testing process, whether carried out in person or by telephone. There are some important caveats with respect to these findings. The most common reason for declining participation in this study was “not interested in telephone counseling.” Although patients in rural areas may not have ready access to in-person genetic counseling, for those patients who do have access, the best outcomes may be achieved when patients are given a choice. For example, some patients may not have the opportunity to have a phone call in private at work or at home and may prefer in-person genetic counseling. Conversely, many patients may prefer the option of telephone genetic counseling. Travel time is an obvious consideration for many patients (particularly those in rural or underserved areas), but there are other valid reasons to choose telephone genetic counseling. Some patients have strong emotional reactions to medical facilities where patients with cancer are treated, and the option of being able to avoid a clinic where family members may have been previously treated is highly desirable to many patients. Although the trial reported by Schwartz et al is the only study to date that included both pretest and post-test telephone genetic counseling, to our knowledge, there are additional data from several smaller pilot studies that have also demonstrated high levels of satisfaction with telephone genetic counseling. It is highly likely that providing patients with a choice will lead to higher genetic counseling uptake and higher patient satisfaction than limiting patients to one service model. Additional studies will need to explore the impact of having such choices on patient outcomes. Although the participants in this study were clearly appropriate for BRCA1/2 genetic counseling, they may not be representative of the patients referred to a typical cancer genetic counseling practice. Individuals referred for urgent testing, with metastatic disease or with less than a 10% risk of having a BRCA mutation were excluded. In practice, those needing urgent testing might actually benefit most from having access to telephone genetic counseling, given that the wait time for a consultation could be expected to be minimal. Participants were also predominantly non-Hispanic white and highly educated, and most had a previous cancer diagnosis. A full third of participants had family members with a known BRCA mutation, and nearly a third had Jewish ancestry. Although genetic counseling is a highly personalized undertaking, BRCA testing in the setting of a known familial mutation, Jewish ancestry, or for patients with cancer is generally more straightforward than testing for unaffected women, lower-risk women, or for women with non-Jewish ancestry; more time must be spent discussing the possibilities of unclassified variants and of a socalled uninformative result for many patients. Further studies in settings with more diverse patient populations may shed light on whether there are particular types of patients who benefit more when complex topics are discussed in person versus over the phone. Test uptake was slightly lower in the telephone genetic counseling group. As the authors note, this may result from the convenience of being able to provide a sample for testing immediately after the inperson consult, or it may have resulted from the decliners having lower risks/less interest in testing. However, the lower uptake rate could also be related to an as-yet unknown difference between telephone and in-person genetic counseling. Future studies that look at telephone genetic counseling might try to obtain reasons for declining testing to shed light on this difference. One important component of this study was the use of visual aids that were sent to the telephone genetic counseling group before their consultation. In a world in which cell phone use is ubiquitous and landline use is decreasing, setting up the telephone genetic counseling appointment to approximate in-person genetic counseling as much as possible is essential. This includes ensuring that the patient understands the expected length of the consult and the importance of minimizing distractions at the time of the call. Using visual aids while on a JOURNAL OF CLINICAL ONCOLOGY E D I T O R I A L VOLUME 32 NUMBER 7 MARCH 1 2014