The results of our study suggest that the majority of genetic counselors have used telephone to communicate BRCA1/2
test results to patients, although only 30% of participating genetic counselors reported using telephone for disclosure of BRCA1/2
test results the majority of the time. Others have reported similar use of telephone for disclosure BRCA1/2
results among practicing cancer genetic counselors24,25
. Our study provides additional detail regarding how telephone communication is incorporated into the delivery of genetic services, as well as, genetic counselors’ experiences with telephone disclosure. Results from our survey indicate that genetic counselors use telephone communication for post-test counseling more frequently than for pre-test counseling. Additionally, genetic counselors reported using telephone disclosure for communication of other types of genetic test results for both cancer, and non-cancer conditions. Thus, an alternative model to in-person pre-test and post-test counseling for genetic testing for hereditary predisposition to cancer and other medical conditions has begun to be adopted in clinical settings.
Participating genetic counselors identified both perceived advantages and disadvantages to telephone communication of genetic test results, highlighting several potential benefits, such as, increased convenience for patients, faster return of results for medical decision-making, and increased patient satisfaction and control. Despite perceptions of potential disadvantages and reports of perceived negative experiences, the majority of participating genetic counselors reported interest in telephone communication of genetic test results. Nonetheless, genetic counselors’ comfort with telephone disclosure varied by the test result. They reported significantly less comfort sharing positive and variant of uncertain significance results by telephone, suggesting less comfort with potentially emotionally distressing or cognitively complex results by telephone. Additionally, genetic counselors reported a variety of patient factors (e.g. financial or medical hardship, preference, comprehension, and psychological well-being) which they consider in deciding to utilize telephone disclosure of BRCA1/2 results, suggesting a need for empirical data to assess the impact of patient factors on adaptation to test results.
While some studies have begun to evaluate outcomes of telephone communication of BRCA1/2
test results, they have included select populations22,23,25,26
, such as patients self-selecting the delivery mode23,25
. In the only randomized study that has evaluated telephone versus in-person disclosure, Jenkins et al. reported no significant difference in knowledge, anxiety or patient satisfaction between telephone and in-person disclosure of genetic test results22
, although this study was not powered to evaluate differences among subgroups, such as different test results. Other relevant outcomes (e.g. performance of risk reduction behaviors, and communication to at-risk family members) and the biopsychosocial factors mediating these outcomes remain poorly described.
Genetic counselors identified perceived advantages and disadvantages of telephone disclosure specific to their practice that are relevant to future studies investigating alternative delivery models for genetic services. Many genetic counselors identified perceived time-savings with telephone communication of genetic test results, although some indicated increased effort associated with additional follow-up calls or activities. The inability to bill for telephone services was reported as a disadvantage and might present a significant barrier to alternative models of delivery. Additionally, many genetic counselors identified discomfort with telephone disclosure in general, or in specific situations. The development of provider training programs and provider experience could help to optimize provider comfort and skills, and potentially patient outcomes.
We acknowledge several limitations to this study. It is possible that genetic counselors interested in, or currently using telephone disclosure may have been more willing to participate in the study. Thus, it is possible that these findings may not represent the experiences and views of a broader population of practicing genetic counselors. Additionally, participants in our study were more likely to practice in academic settings and to have less than 10 years experience in clinical cancer genetic counseling. Thus, the findings in this study may not reflect the opinions and experiences of genetic counselors practicing in non-academic settings and those with more than 10 years experience. This survey was completed in 2008, and practices may have changed since the time of investigation. Additionally, items inquiring about practice frequencies were based on participant recall and participants may have interpreted items inquiring about “interest in” providing genetic test results differently; open-ended items were intended to be exploratory, identifying the spectrum of experiences and opinions. The reported negative experiences might also be reported with in-person disclosure, highlighting the value of randomized studies to evaluate modifications to genetic service delivery models.
Many genetic counselors utilize the telephone to share BRCA1/2 and other genetic test results, however, most, infrequently. While many genetic counselors are interested in telephone disclosure of BRCA1/2 results, they identify potential advantages and disadvantages to telephone disclosure, and recognize the potential impact of testing factors and patient factors on disclosure outcomes. Further research evaluating the potential advantages and disadvantages of telephone disclosure, including the impact of testing and patient factors on cognitive, affective, social and behavioral outcomes is warranted before telephone communication becomes widely and uniformly adopted as standard-of-care.