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.

Trial registration: ClinicalTrials.gov NCT00287898.

Keywords: BRCA1/BRCA2; Genetic counseling; Patient satisfaction; Telephone counseling.

Conflict of interest statement

Conflict of Interest: Ms. Peshkin, Mr. Kelly, Ms. Similuk, Ms. DeMarco, Dr. Valdimarsdottir, Ms. Forman, Ms. Rispoli Joines, Ms. Davis, Ms. McKinnon, Dr. Graves, Dr. Isaacs, Dr. Wood, and Ms. Jandorf declare that they have no conflict of interest. Ms. Nusbaum is an employee of GeneDx, but was employed at Georgetown University during all patient accrual and data collection. Dr. Hooker is an employee of NextGxDx, but was employed at Georgetown University during her participation in the study. Ms. McCormick has obtained paid compensation from Myriad Genetics. Dr. Garber has research funding from Myriad Genetics. Dr. Schwartz serves as an uncompensated member of the Scientific Advisory Board for InformedDNA (St. Petersburg, FL).

Figures

Figure 1

Figure 1a. Baseline Distress Moderates the Impact of Group on Attentiveness Figure 1b. Race/Ethnicity Moderates the Impact of Group on Perceived Counselor Support