Racial, Cultural, and Dyadic Relationship Factors Influencing Treatment Decisions About Active Surveillance for Localized Prostate Cancer

To date, most newly diagnosed prostate cancers (PCa) are low-grade and low-risk tumors that are confined to the prostate. Active surveillance is now a well-recognized management program for men with low-risk PCa, but many newly diagnosed patients are not fully aware of the details of such a program. Active surveillance (AS) involves close monitoring of the tumor with the intent to intervene with curative treatment if PCa progression is evident. In spite of the benefits of AS, existing cohorts largely consist of Caucasian men. Additionally, Caucasian men appear to persist on AS protocol at a greater frequency than black men. Such disparity in health care may lead to a lost opportunity for improving survivorship quality, higher healthcare costs, and increased risks of cancer progression due to non-adherence to AS protocol in ethnic minority men. Our current research (PC140612; Principal Investigator: Mohamed) showed significant influences of patients' intimate relationship partners' involvement on men's decisions about AS. In this proposed study, using mixed-method qualitative (e.g., focus groups) and quantitative approaches (e.g., survey), we plan to examine racial, cultural, and dyadic relationship factors (e.g., intimate partners' attitudes towards and beliefs about the benefits and risks of AS) that influence minority men's and their partners' treatment decisions, adherence to AS protocol, and dyadic (i.e., patient-partner) emotional adjustment, coping with uncertainty, and health-related quality of life.

In this study, and guided by our research findings, literature review of research in health disparity in PCa patients, and two well-established theoretical frameworks (the Theory of Planned Behavior [TPB]; and the Actor–Partner Interdependence Model [APIM]), and with input from the participating experts (i.e., urologists, social workers, psychologists), we plan to conduct focus groups with 30 newly diagnosed black and Hispanic PCa patients and their intimate relationship partners to examine: (a) their informational and supportive care needs, (b) their relationship factors, salient beliefs, and expectations about AS, and (c) their (dis)agreement in salient beliefs, attitudes towards and decisions about AS, and how their (dis)agreement affects patients' adherence to follow-up care. Participants will be recruited from four sites in New York including the Mount Sinai Health System, University Hospital of Brooklyn, Kings County Hospital, and James J. Peters VA Medical Center. All focus groups (Phase 1) will be audio-recorded, transcribed, and analyzed. Results will guide the development of new culture-sensitive items and the selection of standardized measures to assess predictors of patients' and partners' decisions, adherence to AS, and adjustment. New items will be refined through an iterative process of reviews and revisions based on experts' input and pilot-tested for reliability and validity before Phase 2.

In Phase 2 of this study, we will conduct surveys in newly diagnosed PCa black and Hispanic patients and their partners (N = 470 dyads) to examine: (a) the effect of patient's and partner's race, sexual orientation, cultural beliefs, and relationship factors on their attitudes, salient beliefs, and decisions about AS; (b) (dis)agreement (i.e., minimization, congruence, maximization) between patients and partners in their attitudes, salient beliefs, and decisions to opt for AS; (c) and how their (dis)agreement influences patients' adherence to AS follow-up protocol, and their emotional adjustment, coping with uncertainty, and quality of life. These proposed analyses will be conducted to help distinguish unique effects of patient and partner predictors of treatment decisions and adherence to AS with the goal to inform the selections of different components for future dyadic and triadic (patient-partner-provider) culture-sensitive decision-making interventions and communication training programs for PCa clinicians. Phase 2 participants will be recruited from the same four sites.

This proposed research is innovative as it is the first time that a prospective and longitudinal study design is used to examine racial, cultural, and dyadic factors affecting dyadic decisions about AS and patients' adherence to AS protocol. The use of an integrative model of behavioral prediction to guide the study design is novel. The proposed research has high-impact potential because it addresses an important problem in PCa disparity. It also has the potential to impact ethnic minority patients' and their intimate partners' quality of life, coping with uncertainty, and adjustment to an anxiety-provoking, lifelong follow-up protocol. The potential for integration and dissemination of study culture-sensitive measures and outcomes in PCa disparity research to improve dyadic and triadic communication is high.