Patient Perceptions of Telephone vs. In‐Person BRCA1/BRCA2 Genetic Counseling

Abstract

Telephone genetic counseling (TC) for hereditary breast/ovarian cancer risk has been associated with positive outcomes in high risk women. However, little is known about how patients perceive TC. As part of a randomized trial of TC versus usual care (UC; in-person genetic counseling), we compared high risk women’s perceptions of: (1) overall satisfaction with genetic counseling; (2) convenience; (3) attentiveness during the session; (4) counselor effectiveness in providing support; and (5) counselor ability to recognize emotional responses during the session. Among the 554 participants (TC, N=272; UC, N=282), delivery mode was not associated with self-reported satisfaction. However, TC participants found counseling significantly more convenient than UC participants (OR = 4.78, 95% CI = 3.32, 6.89) while also perceiving lower levels of support (OR=0.56, 95% CI=0.40–0.80) and emotional recognition (OR = 0.53, 95% CI = 0.37–0.76). In exploratory analyses, we found that non-Hispanic white participants reported higher counselor support in UC than in TC (69.4% vs. 52.8%; OR = 3.06, 95% CI = 1.39–6.74), while minority women perceived less support in UC vs. TC (58.3% vs. 38.7%; OR = 0.80, 95% CI = 0.39–1.65). We discuss potential research and practice implications of these findings which may further improve the effectiveness and utilization of TC.

Developing genetic counseling for male BRCA1/2 mutation carriers based on their own experiences

“…However, contrary findings that the GC delivery model was not associated with satisfaction in GC in general for women with a BRCA1/2 mutation have been reported. [25] Participants felt that they did not receive information about the importance of the GC from the health-care professionals, in accordance with previous findings that health-care professionals can play an important role in helping women with breast cancer decide whether or not to have GC. [26,27] Our participants also mentioned that they received inadequate written material, in line with findings that most women with breast or ovarian cancer were inadequately prepared because of lack of pre-information.…”

Patient and genetic counselor perceptions of in-person versus telephone genetic counseling for hereditary breast/ovarian cancer

“…First, genetic counselor session ratings did not differ between TC and UC. This finding, in conjunction with other results from this trial [19, 21], suggests that TC and UC may be comparable in terms of how counselors perceive their ability to deliver key aspects of genetic counseling. Second, genetic counselors rated their sessions with non-Hispanic White participants as slightly more effective than their sessions with minority participants.…”

“…As reported previously [19], we assessed patient perceptions of their pre-test genetic counseling session at the 2-week follow-up interview via face-valid Likert-style measures. Specifically, we assessed patients’ perceptions of: 1) Satisfaction with the session (Not at all satisfied to very satisfied); 2) Convenience of the genetic counseling process (Extremely inconvenient to extremely convenient); 3) Ability to maintain attention during the session (Extremely difficult to not difficult); 4) Counselor provision of emotional support (Extremely ineffective to extremely effective); and 5) Counselor’s ability to recognize participant emotions (Extremely ineffective to extremely effective).…”

“…In a follow-up analysis, we found that minority women (i.e., those other than non-Hispanic Whites) randomized to TC had lower rates of BRCA1/2 genetic testing when compared to minority women in UC (53.1% vs. 76.2%, respectively) [22]. When we examined participant perceptions of the genetic counseling sessions, we found that although delivery mode was not associated with overall satisfaction, TC participants perceived significantly lower levels of support and emotional recognition by their genetic counselor compared to women in UC [19]. These findings raise questions about whether there are meaningful differences in how telephone versus in-person genetic counseling is delivered and perceived by patients, including minority and non-minority participants.…”

Multi-disciplinary summit on genetics services for women with gynecologic cancers: A Society of Gynecologic Oncology White Paper

“…The provider should also acknowledge the increased complexity of panel testing for many genes. In the absence of a local cancer genetics professional, early research has shown the efficacy of genetic counseling via telephone conversation [44][45][46][47][48] and telemedicine via live videoconferencing [49]. Other service delivery models discussed among the summit attendees included group counseling instead of individual counseling and online counseling in real time or by previously prepared materials.…”