PEER Bladder Cancer Program

Over the past 9 months, a stakeholder group consisting of patient advocates and researchers met monthly to discuss unmet research needs in the advanced stage bladder cancer population. Discussions addressed clinical trial design and incorporation of important patient-centered outcomes within existing studies. Given that many studies are now incorporating health-related quality of life, the working group began to focus on two areas which have not been addressed: financial toxicity related to bladder cancer care and caregiver burden. Although all stakeholders agreed on the importance of understanding and addressing financial toxicity, constructing a research agenda would be challenging. Therefore, emphasis transitioned to better understanding caregiver burden and interventions that could address this problem. Stakeholders constructed a survey to better understand the scope of the problem through asking several questions: is caregiver burden a significant issue in the bladder cancer community? What interventions may alleviate caregiver burden? What resources already exist and are effective? How can interventions be scaled and disseminated to ensure equal access to those in need? Next steps of the group will be to synthesize survey results and design an intervention (which can subsequently be tested).

Following the BCAN Leadership Summit in October 2017, a working group of patient advocates and researchers convened monthly meetings to discuss a research program that could effectively address discomfort associated with cystoscopy and intravesical treatment. Stakeholders astutely recognized that we would require a better understanding of the scope of the problem, and spent the last several months designing a comprehensive survey to address several questions: 1) How large of a problem is cystoscopy discomfort? 2) Are there mechanisms that can reduce cystoscopy discomfort? 3) What is currently being used in the community to reduce discomfort? 4) Does discomfort differ based on patient and disease characteristics? 5) What are patient preferences to reduce cystoscopy discomfort? The survey has now been completed with over 400 respondents across the country. Results are being analyzed and will be posted here (and sent to participants of the Patient Survey Network). Patient advocates will assist with constructing these summaries in clear, understandable language. Our workgroup will begin designing a research study to effectively study this topic.

A patient advocate group derived from the PEER Scholars at the 2017 BCAN Leadership Summit and augmented with patient advocates who were unable to attend but completed the online training met monthly by web conference to brainstorm research designs that could help patients understand how to decide on therapies for bladder cancer that has become unresponsive to treatments into the bladder with bacillus Calmette-Guerin (BCG). Other stakeholders on the conferences included clinicians, researchers, and staff of BCAN. After initially reviewing available treatments for which comparative effectiveness data may be lacking, the group recognized a gap in the evidence where none of the published trials employed patient-reported outcomes in their trials. Thus, the group conceptualized a study that would compare available NMIBC treatments using patient-reported outcomes. Constructs the group felt it would be important to measure include physical functioning, social functioning, anxiety, depression, urinary function, sexual function, financial burden, and impact of a patient’s caregiver. The group reviewed quality of life survey instruments that had been used previously in urologic cancer studies and selected the PROMIS-29, the EORTC QLQ-NMIBC-24, the Caregiver Burden Scale, and the Comparative Score for Financial Toxicity (COST) for implementation in a prospective observational cohort study. This workgroup is now constructing inclusion and exclusion criteria for the study and testing a web-based interface for the surveys.