Many patients experience stress urinary incontinence (SUI) following surgical treatment for prostate cancer. To understand the impact of SUI on quality of life, a team of UCSF researchers interviewed and surveyed patients and published a series of studies.
The results showed that individual thresholds for tolerating SUI varied widely and that many patients were initially unaware of the available treatment options.
Insights from four studies
One study provided qualitative data on the experience of older men living with post-prostatectomy SUI.
“Incontinence impacts people’s quality of life, but what does that really mean in terms of their lives?” said senior author Lindsay A. Hampson, MD, MAS. “This study gives patients a voice.” Interviews revealed that many patients expressed that they were frustrated, angry and depressed and had stopped participating in social activities and hobbies because of their incontinence.
Eventually, each patient reached a “breaking point” that led him to seek treatment for SUI. Many had difficulty accessing urologic care and some were told there were no treatments. All patients said they wished they had been informed of options sooner.
Data showed that patients who elected conservative treatment for SUI had high levels of dissatisfaction. Those who pursued surgery were more satisfied with their outcomes. However, given the barriers to accessing SUI treatment, patients may not have the opportunity to realize the quality-of-life benefits they can achieve with surgery.
Another study explored how men who underwent surgical correction for post-prostatectomy SUI navigated treatment decisions. In additional to being dry, participants indicated they valued other factors, including sexual and relationship health.
In further research led by Hampson, patients indicated that they weighed their desire for dryness, a traditional clinical endpoint, against other factors, such as wanting to avoid mechanical devices or additional surgery. While surgeons may be focused on traditional endpoints, this study showed that other factors can be as or more important to patients.
Data also revealed that patients rely heavily on input from urologists to assist in treatment decisions. One study showed that when there was less shared decision-making, patients had more regret around the treatment decision. “Urologists play a really big role in the decision-making process, so it’s important that they know what matters to patients and how to counsel them appropriately,” Hampson said. The researchers concluded that recognition of depression, further efforts at shared decision-making and more personalized counseling have the potential to improve patient satisfaction with treatment choice.
“These studies help us understand, from the patient perspective, what’s important to them. This helps to inform individualized counseling and decision-making to ensure patients are making the choices that are right for them,” Hampson said. “Sometimes there are other things that actually matter more to patients than being completely dry.”
Informed decisions lead to positive outcomes
Based on the results of these studies, Hampson and the other researchers determined that it’s important to discuss SUI treatment options with patients as soon as possible so that they’re well-informed.
“In concert with all this research, we at UCSF help provide access to treatments and counseling, and help patients make individualized decisions,” Hampson said. “We treat people uniquely, rather than a one-size-fits-all approach, and help patients come up with the right choice for them.”
SUI is a known complication of prostate cancer treatment. Surgical management of this condition includes placement of a urethral sling or an artificial urethral sphincter. Hampson and other UCSF urologic surgeons specialize in these procedures.
“We are very experienced in treating complex cases and getting those patients to their desired end results,” she said.
NIH grant for SUI research
In addition to past funding from the National Institutes of Health (NIH) and the Doris Duke Charitable Foundation, Hampson was recently awarded a five-year NIH K76 grant for her project, “Improving Patient-Centered Decision-Making for Stress Urinary Incontinence Treatment in Older Men.” This research seeks to improve goal-concordant management for post-prostatectomy SUI among older adults.
“I am thrilled to receive this grant and excited to embark on this research, which I believe will improve quality of care and quality of life for this important patient population,” she said.
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