Graphical Representations of Symptoms of Prostate Cancer (GRASP): Preferences for Quality of Life Presentation Among Underserved Prostate Cancer Patients
Abstract
Prostate cancer is the commonest cancer diagnosed in U.S. men and is a leading cause of cancer deaths. Because the prostate sits below the bladder, above the rectum, and is surrounded by the erection nerves, treatment for prostate cancer can cause urinary problems, sexual dysfunction, and bowel problems. Yet most quality of life (QOL) efforts in prostate cancer seek to characterize the severity of the problem, without defining efforts to address these problems. We have constructed a web-based platform that presents men with graphical displays of QOL survey results and offers men self-management content for bothersome symptoms. However, the design work came from research with local prostate cancer focus groups, and most participants had high education levels and high health literacy. We hope to broaden access to this tool through a research study targeting underserved men with prostate cancer, including underserved racial and ethnic minorities and men at risk for lower health literacy. We will achieve our objectives through a partnered research project with the California IMPACT (Improving Access, Counseling, and Treatment for Californians with Prostate Cancer) program, which provides free prostate cancer care to underinsured men. Direct work with patients, a process called user-centered design, will involve patients at all stages of development of data presentation formats that appeal to underserved racial and ethnic minorities with prostate cancer. Through focus groups with men at all stages of prostate cancer, we will understand which QOL questions and concerns are important to underserved racial and ethnic minorities with prostate cancer. Themes from these focus groups will then be reviewed with a Patient Advisory Board to design several QOL dashboards that we will test in one-on-one interviews with IMPACT patients. The product of this research will be a design concept targeting the self-management and QOL needs of underserved racial and ethnic minorities with prostate cancer. We will further assess preferences for modes of data presentation in order to develop workflows that will increase access to this content among underserved racial and ethnic minorities with prostate cancer. Findings from this study have the potential to reach a global population through a web-based platform funded by the Movember Foundation that has implemented design concepts from the preliminary work into an interactive self-management system targeting men at all stages of prostate cancer.
Document Details
- Document Type
- DoD Grant Award
- Publication Date
- Oct 29, 2018
- Source ID
- W81XWH1810465
Entities
People
- Mark Litwin
Organizations
- United States Army
- University of California, Los Angeles