Comparing post-test genetic counseling with and without pre-test counseling: The evolving landscape for optimizing cancer care

Project Summary (Abstract)
The number of people who qualify for hereditary breast and ovarian cancer (HBOC) genetic testing has outpaced
the number of genetic counselors qualified to provide these services in the United States. Due to this increase,
non-genetics professionals are increasingly ordering testing, with genetic counselors meeting patients/clients
only after test results are available – a shift from the traditional model of seeing clients for both pre- and post-
test counseling. The overall objectives of the proposed research are to characterize the content and process
of HBOC post-test genetic counseling when it is preceded by pre-test counseling with a genetic counselor versus
not (F99), observationally assess differences in client outcomes when HBOC post-test counseling is preceded
by pre-test counseling with a genetic counselor versus not (F99), and iteratively develop a novel, evidence-based
genetic counselor communication skills training program for improving HBOC post-test genetic counseling (K00).
Effective genetic counseling is critical for ensuring clients understand key information about their genetic test
results, subsequent health management recommendations, and that they are equipped to begin psychologically
adapting to these results. The strength of the client-counselor therapeutic relationship is associated with better
psychological outcomes, including better quality of life, satisfaction with care, and decreased symptoms of
depression. Although effective communication is considered a key component of the genetic counseling process,
no research has sought to observe whether post-test counseling communication is associated with client
outcomes. Additionally, potential differences in client outcomes have not been assessed when post-test
counseling is preceded by pre-test counseling versus when it is not preceded. Without pre-test counseling, there
are fewer points of clinical contact to establish a therapeutic relationship, and therefore the relationship may be
weaker when post-test counseling is not preceded by pre-test counseling (thus potentially decreasing the quality
of care). Grounded in patient-centeredness frameworks for cancer communication and care, this proposal
seeks to understand whether there are differences in client outcomes, including client perceptions of genetic
counseling communication, the therapeutic relationship, psychological well-being, efficacy for follow-up,
decisional regret, and/or retention of key information, depending on whether post-test counseling was preceded
by pre-test counseling by a genetic counselor. Genetic counselors must adjust to seeing fewer clients for pre-
test counseling and optimize post-test counseling interactions to meet the needs of clients and support their well-
being. To optimally facilitate a therapeutic relationship, it is critical to understand the effect of providing post-test
genetic counseling with and without pre-test counseling. My long-term research goal is to sustainably improve
HBOC genetic counseling to meet the needs of clients and adapt to the changing landscape of precision
medicine. This research directly addresses NCI scientific priorities and Cancer Moonshot initiatives, and the
proposed training plan will help establish my trajectory as an independent cancer genetic counseling researcher.

Grant Number: 5F99CA294165-02
NIH Institute/Center: NIH
Principal Investigator: Elizabeth Broadbridge