Cancer genetic counseling is not available in most public hospitals (National Academies, 2018). Genetic counseling may be extended to the underserved remotely by phone or video conference, but the benefits and harms of these delivery modes have not been studied in low-resource settings. We compared the effectiveness of genetic counseling delivered in person with that by phone and videoconference in three public hospitals where we recruited ethnically diverse, high-risk patients for participation in a mixed method multicenter partially randomized preference noninferiority trial.
Eligible patients were identified using questionnaires in clinics or via referral and were recruited to the study by phone. Informed consent was followed by randomization and completion of a baseline survey that assessed demographics and genetic counseling/testing knowledge. Following pre-test counseling, participants completed a final phone survey to assess satisfaction and knowledge changes. In-depth interviews were conducted with two genetic counselors and a sample of participants to compile 23 case studies. Of 1,574 eligible patients, 394 were randomized and 312 completed the trial. Of these, 99 were assigned to in-person counseling, 116 to phone, and 97 to video. Demographically, 22% were Black, 29% White, 39% Latina, 6% Asian, 4% other race/ethnicity; 76% spoke English, 22% Spanish, 2% Chinese; and 37% had high school education or less.
Counseling attendance varied significantly by assigned mode (77% in person, 75% via video at a clinic, and 92% by phone), but all modes yielded equivalent findings among the outcomes measured by the final survey. Respondents overwhelmingly rated every mode as “very convenient” and satisfaction with counseling as “very high.” Compared with baseline, knowledge increased significantly regardless of mode. However, the increase was significantly lower for African Americans and for those with less education across all modes.
Case study findings validated the high satisfaction with counseling reported in the final survey. Phone patients appreciated the convenience despite some connectivity and hearing challenges and the fact that both patients and counselors reported problems engaging and focusing over the phone. For patients, multitasking was also an issue. Importantly, however, those for whom testing was appropriate were less likely to complete it when counseled by phone.
In interviews, patients were asked to consider the alternate modes. Those counseled in person felt they could develop more trust for a provider in person, it was easy to pay attention, and it was convenient to initiate testing immediately. Genetic counselors also felt they could engage better and demonstrate more empathy in person versus the phone. It is notable that many patients counseled by phone said they would not be able to access genetic counseling any other way. Still, several felt they would get more from in-person counseling. Phone appointments tended to be shorter in duration, and our qualitative interview data suggest that communication was less effective with this mode. Case studies of video counseling found many similarities with the in person appointments including the formation of meaningful connections and the opportunity to see visuals used by the counselor.
In a time when remote genetic counseling has become a necessity for many health systems, providers may be reassured by our findings of equivalent outcomes by genetic counseling in person, telephone, and video. Nevertheless, key take-home messages may require more explicit explanation and the use of the “teach-back” method (Brega et al., 2015), particularly when counseling by phone.
In practice and in further research, we must strive to achieve effective communication with African American patients and those with less than high school education.
Providers may be reassured by our findings of equivalent outcomes by genetic counseling in person, telephone, and video.
National Academies of Sciences, Engineering, and Medicine. (2018). Understanding disparities in access to genomic medicine: Proceedings of a workshop. Washington, DC: The National Academies Press. doi: 10.17226/25277.
Brega A, Barnard J, Mabachi N, DeWalt D, Brach C, Cifuentes M, Albright K, West D. (2015). AHRQ health literacy universal precautions toolkit, second edition. (Prepared by Colorado Health Outcomes Program, University of Colorado Anschutz Medical Campus under Contract No. HHSA290200710008, TO#10.) AHRQ Publication No. 15-0023-EF. Rockville: Agency for Healthcare Research and Quality.