Telephone disclosure of BRCA1/2 test results? Opinions of recipients of BRCA1/2 testing.
Authors: L Patrick-Miller, S Cummings, D Fetzer, H Schmidheiser, A Bradbury
Journal: Cancer Research (2009)

Abstract Abstract #2098 Background: Disclosure of BRCA1/2 test results has historically been conducted in person by a health care professional. Due to increasing consumer demand for, and access to BRCA1/2 testing, as well as the increasing prevalence and acceptance of telemedicine, there has been interest among those who provide BRCA1/2 testing in delivering risk assessment and genetic counseling services, including disclosure of genetic test results, by telephone and internet. Consumers' opinions regarding, and interest in receiving their genetic test results via telephone have not been well described. Method: Conducted semi-structured telephone interviews with individuals who had received BRCA1/2 test results in the last 9 months or were awaiting BRCA1/2 test results to assess opinions about the use of telephone disclosure (TD) among consumers of BRCA1/2 genetic testing. To date: 30 participants interviewed. Results: Although 90% (23/26) of participants who had received their genetic test results reported being satisfied or very satisfied with their in-person disclosure session, 50% reported that they would have been interested in receiving results by telephone. 47% stated they would have preferred in-person disclosure. Interest in TD did vary by test result (interested: mutation carriers 2/7, 29%; VUS 1/3, 33%; true negative 4/8, 50%; indeterminate 5/8, 53%). A greater proportion of men reported interest in TD (3/4, 75%). Interest in TD did not appear to vary by age. In response to open query, the most frequently reported perceived advantage to TD was convenience (n = 10); the most frequently cited perceived disadvantage was lack of visual and personal connection between recipient and provider (n =15). Among those awaiting test results, 3/4 (75%) reported that they would have been interested in TD. 67% would prefer that TD be conducted by a genetic counselor or physician; 57% would prefer a genetic counselor and 10% would prefer a physician. Many (60%) reported that they would be willing to return for an in-person visit, although 24% stated that this would depend upon their results. Discussion: The results of this ongoing study suggest that many consumers of BRCA1/2 testing may be interested in receiving test results by telephone. Continued enrollment at 2 additional sites will allow for multivariate analysis of the biopsychosocial factors associated with consumer interest in TD. Given consumer and provider interest, and the expansion of testing for BRCA1/2 and other hereditary cancer syndromes, longitudinal study of the cognitive, affective and behavioral responses to TD is warranted. Understanding the impact of TD on factors such as, comprehension, risk perception, communication and performance of risk reducing behaviors, and their mediators will be critical for the development of TD policy and procedures that will optimize adaptive responses to receiving genetic test results via telephone or internet. Citation Information: Cancer Res 2009;69(2 Suppl):Abstract nr 2098.