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

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. 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 positive client outcomes. Additionally, potential differences in 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). 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. Grounded in patient-centeredness frameworks for cancer communication and care, this dissertation sought to (1) develop an integrated framework for communication outcomes within the patient-centered communication outcomes model (Street et al., 2009) and (2) understand whether there are differences in communication outcomes and/or proximal genetic counseling outcomes depending on whether post-test counseling was preceded by pre-test counseling by a genetic counselor. Communication outcomes include client uncertainty, perceptions of the therapeutic relationship, perceived communication quality, disclosure efficacy, and efficacy for follow-up. Proximal genetic counseling outcomes include reported psychological distress, client-counselor trust, perceived involvement at desired level in the genetic counseling session, retention of key information, intention for follow-up, and intention to inform at-risk relatives. To accomplish these aims, I partnered with genetic counselors and clinicians at the Rutgers Cancer Institute to record post-test genetic counseling sessions that occurred after pre-test counseling (n = 73) and as the first point of contact (n = 9). Each audio recording was processed using an established communication coding system. Additionally, clients were asked to complete a set of surveys before and after their post-test counseling appointments to assess communication outcomes and proximal genetic counseling outcomes. Aim 1 was to assess differences in post-test proximal genetic counseling outcomes when counseling occurs with and without pre-test counseling. I hypothesized that clients would report better communication outcomes and proximal genetic counseling outcomes after post-test counseling that is preceded by pre-test counseling than when it is not. Results revealed that psychological distress decreased for all patients from T0 to T1, and the magnitude of this change was larger for those seen via the traditional model of counseling. Next, aim 2 was to characterize (a) the content and process of communication (e.g., more or less patient-centered) and (b) whether patterns of communication are associated with communication outcomes and/or proximal genetic counseling outcomes. I hypothesized that (2a) when no pre-test counseling has occurred, communication would be less-patient-centered and (2b) communication patterns that display more patient-centered features would be associated with more favorable ratings of proximal genetic counseling outcomes and/or communication outcomes. The post-test only model of communication had more patient-centered communication features, and sessions with more patient-centered communication features did indeed have more favorable genetic counseling outcomes. Finally, aim 3 was to test whether there is an indirect effect of patient-centered communication on proximal genetic counseling outcomes through communication outcomes. I hypothesized that more favorable ratings of communication outcomes would be associated with better proximal genetic counseling outcomes. Results provide preliminary evidence for several of the relationships between communication outcomes and proximal outcomes, including higher uncertainty predicting more psychological distress, and a better relationship predicting less distress. My long-term goal is to sustainably improve hereditary cancer genetic counseling communication and training to meet the needs of clients and adapt to the changing landscape of precision medicine. I aim to accomplish this through interdisciplinary approaches that leverage my developing expertise in health communication research and methods and clinical training as a genetic counselor.