DESCRIPTION (provided by applicant): BACKGROUND: Hereditary breast and ovarian cancer is rare but serious. Practice guidelines call for counseling by a certified genetic counselo for those at risk to determine if a genetic test is appropriate and to assist in making an informed
decision about testing. For more than two decades, genetic counseling (GC) has been widely available to those with the means to cover the high cost, but has only recently become financially accessible to low-income income patients through Medicaid and foundation grants. As a result, GC is concentrated in elite medical centers and is not offered in most safety net hospitals. Overall, there are too few Genetic Counselors to meet the growing demand. This inequity represents an early and ominous example of how advances in precision medicine can exacerbate health disparities - by leaving further behind those who already experience an excess burden of disease. GC may be extended to the underserved remotely by phone or video conference, but the benefits and harms of these delivery modes for safety net patients are not known. While recent research compared phone and in-person counseling in insured and rural populations, the dynamics are different in the safety net, and video conference and patient preference were not assessed. The complex and highly personal nature of this interaction, along with the importance of culture and health literacy, inform our research questions: i) what is
the comparative effectiveness of GC delivered face to face, by phone, or via videoconference for public hospital patients with regard to knowledge, cancer distress, decisional conflict, perceived stress, risk perception, satisfaction, recall, and patient centeredness? ii) how do culture and health literacy influence these outcomes? iii) do safety net patients have a preference for mode of counseling and how does preference affect outcomes? AIMS: 1. Compare 3 modes of genetic counseling with patients at high risk for HBOC in 3 public hospitals. 2. Explore inductively and qualitatively variation in patients' genetic counseling experiences and understandings; genetic counselors' satisfaction and perceptions; and counseling session similarities and differences. METHODS: Using mixed methods, we will conduct a multicenter partially randomized preference no inferiority trial with high-risk English-,
Spanish-, and Cantonese-speaking patients assigned by (1) patients´ preference or (2) randomization to three counseling modes: (a) in-person; (b) phone; or (c) video conference. A total of 600 patients will complete counseling and 540 will complete the final survey. Baseline and post-counseling surveys will use validated measures (adapted for literacy and language) of study outcomes. All counseling sessions will be audio-taped. A sample of 90 tapes will be analyzed for counseling content and to identify 30 participants for in-depth interviews and analysis triangulating all forms of data. Genetic counselors will be interviewed in depth to elicit
their perceptions of the strengths and limitations of each counseling mode.
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