Design and Development of a Prostate Cancer Survivor Self-Reported Registry.

Background: Prostate cancer (PCa) incidence and survival rates continue to rise among African American men. An estimated 161,360 new cases were expected to occur in 2017. With increased survival rates, individuals are living longer, thus increasing the risk of experiencing adverse physical and psychosocial longterm effects of the cancer and its treatment. This study explores how minorities affected by PCa can become more informed and active in the decision-making process in the context of a support community. Methods: An online registry was created by researchers from the Center for Cancer Research & Therapeutic Development. The registry captures participants' demographics and clinical disease information throughout the PCa continuum. The registry was made available online at www.pcregistry.cau.edu, required registration and informed consent, and included mechanisms to maintain confidentiality. A voluntary response sample was utilized. Conceptual framework from Andersen's version of the Behavioral Model of Health Services Utilization and Wilson and Cleary's Model of Health-Related Quality of Life were used as the basis for the survey. Key consultants were engaged as community relations advisory board members. Comprehensive recruitment strategies were employed yielding a response rate of over 1000 registered survivors, surpassing the goal of 500. Conclusion: The PCa registry targets a specific group of survivors, exploring subsets that may be underserved or high-risk for distress. The registry is not linked to treatment location, thus respondents are more compelled to share their experience. A comprehensive database system provides ongoing information on health and issues facing ethnic PCa survivors and identifies gaps to determine areas of future research while developing a consensus on implications survivors may face. [ABSTRACT FROM AUTHOR]