Mp58-05 development of Patient-Centered Bladder Cancer Research Priorities via Engagement With Patients

Abstract

INTRODUCTION AND OBJECTIVE:The research process is often conducted without the meaningful input of the patients it affects. To conduct truly patient-centered research, it is essential to engage patients through the entirety of the research process. There have been limited prior studies on patient-centered research prioritization in patients with bladder cancer (BCa), making it unclear what research topics are important. To address this, we established the Wisconsin Bladder Cancer Network (WiBCaN). This project aims to discover what research topics are important to BCa patients and their caregivers in the state of Wisconsin and to get them engaged in the research process.METHODS: Using prioritized research questions identified in previous research, we created a survey to identify important research topics via REDCap. This initial survey was designed to evaluate two domains: the patient experience and decision-making at the time of diagnosis. Beginning in December 2020, we engaged patients with BCa across the state of Wisconsin to complete the survey and join WiBCaN. Recruitment was conducted by email, telephone, mail, and in-person primarily from the senior author's panel of patients (KAR). The data from the first 105 respondents was analyzed.RESULTS: In the first three months of recruitment, 102 patients and three caregivers completed the survey. Patients' mean age was 70 (range 48-92) and the mean age of BCa diagnosis was 66 (range 40-88). 59% of patients had non-muscle invasive bladder cancer and 48% had undergone cystectomy. While it is clear that patients had a diverse range of experiences, many echoed similar priorities in their responses. In the domain of patient experience, further research on treatment/intervention was found to be the highest-ranked priority with 66% of respondents saying that stopping the disease from progressing is the most important aspect to them in their patient experience. Regarding decision-making at the time of diagnosis, the highest-ranked priority was the appropriate time for cystectomy when needed with 61% of respondents reporting it was the most important aspect for them in the decision-making process.CONCLUSIONS: WiBCaN successfully identified patient-reported research priorities and has laid the foundation for an engaged network of patients with BCa in the state of Wisconsin. While patients have reported a diverse range of experiences thus far, topics such as decisionmaking regarding timely cystectomy are clear priorities for study participants.