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Developing personalized quality-of-life measures for patients undergoing radical cystectomy

Video

“What we'd like to try to do in our research is see if we can begin to develop a tool that is more personalized for patients, that can provide a more useful approach to quality of life,” says Bernard H. Bochner, MD, FACS.

In this video, Bernard H. Bochner, MD, FACS, discusses next steps following the European Urology study, “Health-related Quality of Life for Patients Undergoing Radical Cystectomy: Results of a Large Prospective Cohort,” for which he served as senior author. Bochner is the Sir Murray F. Brennan Chair in Surgery at Memorial Sloan Kettering Cancer Center in New York, New York.

Transcription:

What are the next steps for this research?

These reported findings really are the first step for us with respect to reporting the quality of life that patients experience following radical cystectomy. This is not the end for us; in fact, we feel this is the beginning of the research. Our goal here is to take this information and distill it down to develop a tool that is a little bit easier for patients and clinicians to deliver. We don't expect that people will be receiving 14 standardized forms and an interview as part of the way in which patient-reported quality of life will be obtained. What we'd like to see, and what we're actively doing now, is running through methodology that allows us to eliminate some of the items that maybe don't provide additional useful information. We're using algorithm and even some machine learning technology to try and see if we can personalize the approach to quality of life for patients with bladder cancer. This is quite important because although many patients that do undergo this surgery tend to be older men, we do this operation on a variety of people: [older] women, younger women. People may be at very different points in their life. You may be an older man who's no longer working, [who] may be widowed or without an active partner. Your concerns may be very different than a younger woman with young kids who's working [and] who has a sexual partner. Their outlook and concerns may be very different. Measuring quality of life with a single form may be missing the point for different people. What we'd like to try to do in our research is see if we can begin to develop a tool that is more personalized for patients, that can provide a more useful approach to quality of life. That's the first major step in the research. We'd love to see this information now be provided to patients as well, and fed back to clinicians. For patients, we think that this should give them optimism, so when they are facing this type of surgery, they could recognize that there is a light at the end of the tunnel. What patients report is that they get back to living their lives. That's very important information. But it also provides a realistic look at what that recovery may be, and what might not get back to normal. For clinicians, I think it's critically important that we hear from our patients what it is that is important to them from a quality-of-life standpoint. If we can provide information back in a timely fashion to clinicians, it may help us with decision-making, maybe perhaps with respect to what it is that we need to focus on to support patients either before or after surgery. For instance, if sexual functioning is a major concern for a patient's overall quality of life, getting them involved with the sexual rehab medicine providers early on may provide an overall improvement in their quality of life. But it's not just sexual function. People can have all kinds of different concerns, and I think that if we're able to address these early on, we might be able to overall improve quality of life in patients. But we have to ask the questions. We have to get good information, and we have to provide some sort of intervention in a timely fashion that's meaningful for patients.

This transcription was edited for clarity.

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