A: The treatment option is completely up to the patient and their doctor. It does not impact their ability to participate in our study.
Q: What happens if a patient chooses to not participate in the study?
A: Participation is completely voluntary. Regardless of whether or not a patient chooses to participate, their healthcare team will be there to support them throughout their treatment.
Q: What are the risks and benefits to each treatment option?
A: There is still much speculation around the risks and benefits of each treatment option. Choosing between additional therapy with medicine and removing the bladder is an incredibly difficult decision. This is why patients are needed to enroll in this study. By improving our understanding of who benefits most from each treatment, future patients in this same challenging situation may have more information to help guide them in their decision process. Even more, their doctors, caregivers, and entire healthcare team may have more information in determining how best to support patients with recurrent NMIBC.
Q: What type of data will be collected?
A: Patients will be asked to complete several surveys per year for up to four years and they will be compensated for their time. Patient partners have tested these surveys and found that they take up to 20 minutes to complete. Quality of life after treatment and the impact on an individual’s finances are some examples of information that will be gathered.
In order to understand how patients' experiences relate to treatment outcomes, we will also use medical records to obtain information about the patient’s medical history, the treatment they selected, and the results of their treatment.”
Q: Have patients been involved in the development of this study?
A: This study is unique because doctors and patients collaborated to bring over a thousand bladder cancer patients together to identify the questions that were most important to patients. With patients as partners, we have designed this study to help answer the most important questions for bladder cancer patients. We have additionally incorporated the voice of patients throughout the development of this study. We have a team of patients and caregivers who have agreed to continue to provide input into the study design and results.
Q: Who is being included in this study?
A: It is important to us that this study represents all types of patients, including people of color and women. If a patient chooses to take part in this study, they will be helping people like themselves make decisions about their healthcare journeys, decisions that will be informed by the critical information they provide as part of this study.