(UroToday.com) Karen Saches, Bladder Cancer Advocacy Network (BCAN) patient advocate, shared the patient perspective in the management of bacillus calmette-guerin (BCG) unresponsive high-risk non-muscle invasive bladder cancer (NMIBC).
Bladder preservation is paramount and patients do not want to lose their bladders, period. There are a number of studies that are increasingly incorporating patient advocates. University of Washington’s Dr. John Gore and Dr. Angela Smith from the University of North Carolina, along with a team of researchers who have been awarded funding for a pragmatic (conducted in a real-world clinical practice setting) clinical study designed to evaluate patient-centered outcomes. Support for this research comes from the Patient-Centered Outcomes Research Institute (PCORI). Known as CISTO (Comparison of Intravesical Therapy and Surgery as Treatment Options for Bladder Cancer), this study will compare bladder removal with medical therapy. Both patients and their caregivers will share their experiences and outcomes following treatment for up to three years.
The goal of this study is to provide information to future patients, their caregivers, and their medical providers so that patients can choose the treatment that best meets their needs based on the outcomes and preferences of patients like them. CISTO is a $8.5 million PCORI grant. The BCAN Working Group is a survey-based assessment focused on improving patient outcomes. Patient advocates are valid to fortify the patient along the pathway toward wellness through sound scientific design and research.
Presented by: Karen Saches, a 10-year survivor of non-muscle invasive bladder cancer, Bladder Cancer Advocacy Network (BCAN) Patient Advocate
Written by: Stephen B. Williams, MD, Medical Director for High-Value Care; Chief of Urology, Professor, Director of Urologic Oncology, Director Urologic Research, The University of Texas Medical Branch at Galveston, TX at the 2020 Virtual Bladder Cancer Advocacy Network Think Tank 2020
A Patient Perspective on High-Risk Non-Muscle Invasive BCG Unresponsive Bladder Cancer- Karen Sachse