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Diane Newman: Welcome to UroToday and our online medical education program. I'm very excited today to present a colleague of mine, Dr. Kristine Talley, who's a professor at the University of Minnesota School of Nursing. I'm excited about her topic, as she's going to present her research on urinary incontinence symptoms in gay and bisexual prostate cancer survivors. Welcome, Dr. Talley.

Kristine Talley: Well, welcome, and thank you for having me on this presentation. I am very excited to talk about the new work that we're doing on an understudied population. So first, I'd like to start by introducing our RESTORE team here at the University of Minnesota. The principal investigator of this study was Simon Rosser, and I am a co-investigator on this study, brought on because of my expertise in incontinence. So today, I'm going to share with you the baseline characteristics of gay and bisexual prostate cancer survivors and what their bladder symptoms looked like.

I want to disclose that this study was funded by the National Cancer Institute.

Survival after prostate cancer treatment is increasing, with over 95% of patients being alive 10 years after treatment. But for many men, this extended survival comes with persistent urinary incontinence that impacts quality of life. Gay and bisexual men are actually a hidden population in prostate cancer treatment, mainly because researchers and clinicians simply don't ask about sexual orientation. Therefore, little is actually known about potential disparities in their cancer survivorship.

You may ask, why might sexual and gender minorities experience prostate cancer differently? Well, the life history of older men who identify as being gay is actually filled with trauma and discrimination that may make their psychological responses to treatment different and contribute to distrust of the medical community. Some of the differences that they experience are that as they were growing up, they had a lack of role models. And also their identity was criminalized and stigmatized, forcing them to stay in the closet.

They also face a lot of rejection from family and possibly from religion, reducing the social support that they have available while they go through cancer treatment. They've also experienced insecurity in employment. They lived with the threat of violence from the public, and about 20% of gay men are living with HIV.

We've done some preliminary work that reports that they may actually have greater problems with urinary dysfunction than the general population of prostate cancer survivors. So this study that I'm reporting attempts to describe common incontinence symptoms for this sexual minority group, so that treatments can be tailored for their needs.

Specifically, we aim to describe urinary incontinence symptoms and severity, to identify how the type of cancer treatment influences incontinence symptoms, and to find demographic and treatment characteristics associated with incontinence so that we can come up with tailored treatment approaches.

This was a cross-sectional analysis of baseline data from a randomized controlled trial called RESTORE. RESTORE is a clinical trial that investigated the efficacy of an online rehabilitation program on urinary and sexual dysfunction in gay and bisexual men who have been treated for prostate cancer.

I'm not going to get too in depth into the methods, but all recruitment and data collection occurred online, mainly through social support programs for gay and bisexual prostate cancer survivors and dating apps. Incontinence was measured with a very commonly used measure of incontinence, so that we could identify the severity and the type of incontinence that these men were experiencing. And then we used traditional statistical analysis to find which types of symptoms are experienced with different treatment types.

The RESTORE participants included 400 gay and bisexual men with a mean age of 63.5 years, and on average, participants had received their prostate cancer treatment about five years ago. The most common type of cancer treatment was surgery, followed by radiation only, and then by combination therapy. The participants experienced many types of incontinence, with the most common being stress incontinence, post-void incontinence, and urgency. But you'll also see high prevalences of insensible incontinence and also nighttime incontinence.

Our first aim was to describe the severity of urinary incontinence by the type of treatment. And what we found was that 43% of the participants in this project reported having at least daily incontinence—so very common for this group of men. Incontinence severity measured by the ICIQ total score was the highest for men treated with surgery and radiation and lowest for those treated with radiation only. So we did see a difference in the severity of incontinence based on the type of prostate cancer treatment, which is comparable to that seen in heteronormative populations.

For our second aim, we did find that some groups experienced more severe urinary incontinence, and these included those with obesity, with lower health-related quality of life, and those with mixed incontinence and climacturia. We also found some interesting characteristics that were not associated with incontinence severity, including age and race, the severity of prostate cancer at the time of diagnosis, and the number of years since diagnosis.

Then in our third aim, we found that men treated with surgery or surgery and radiation were more likely to experience stress incontinence and insensible incontinence, while men treated with radiation were more likely to experience urinary urgency incontinence. And this also follows what we would expect to see in a heteronormative population.

So these findings represent the first reports of urinary incontinence symptoms, severity, and associated characteristics for gay and bisexual prostate cancer survivors. It provides new knowledge on potential health disparities and treatment targets for this sexual minority group. We compared our study findings to the existing literature, and particularly to the large PROTECT trial, and it reveals that gay prostate cancer survivors are similar to the general population of survivors in terms of the prevalence of incontinence, the type of incontinence associated with prostate cancer treatment, and with associated characteristics.

One potential disparity does exist, where we did find that gay men reported greater severity of incontinence and greater bother with their incontinence symptoms. We do, however, need more work to explore disparities that incontinence may pose on their quality of life.

Some treatment considerations: Incontinence was common among these cancer survivors. While the types of incontinence that develop after specific prostate treatments are similar between sexual minorities and heteronormative populations, we do need to develop tailored approaches for delivering incontinence treatments. So some things to maybe add to your treatment plan are, when you're screening or in your assessments, to actually ask about their sexual orientation. It's becoming more common for this to be asked, but it is still something that is not always asked. You really do need to assess their social support. They also may have a strong history of trauma in their life, and so some trauma-informed assessments and approaches are probably needed in this area. And also about 20% of gay men are living with HIV, so that is another component to include in your assessment. And of course, because we did find that they are reporting a higher bother with their incontinence symptoms, definitely ask about their incontinence—how incontinence is bothering their life.

If a patient was treated with surgery for their prostate cancer, they're more likely to have stress and insensible urinary incontinence. This is what we would expect to find with the heteronormative population. The same if you're treated with radiation—they're more likely to have urgency urinary incontinence, so we would want to use those strategies. And likewise, for combination surgery and radiation, stress incontinence is more likely. So the type of incontinence that develops after prostate cancer treatment is not different for gay men versus heteronormative populations, but it really is more about how do we tailor our approach to assessing all the other factors that can contribute or hinder their response to our treatments.

Here is a list of references for those who might be interested. All of these are written by our RESTORE team. I should note that our RESTORE team has the largest volume of literature on the topic of gay men and prostate cancer. So we're a small but mighty group, and I just want to thank you for listening to my presentation about this very important topic. If you do have any questions or would like more information, you can contact me at the information on this slide. Thank you.

Diane Newman: Thank you so much, Kris. That is really exciting research. And you were saying that you're the only group that really has this body of literature—there really isn't anything in the literature in this population, is there?

Kristine Talley: No, there isn't. And that's why even though this might seem like some of it—well, of course, that's what we would expect to find about the types of incontinence that develop after treatment—the idea that they are expressing more severe incontinence symptoms means that maybe we need to take a different approach to treating them.

Diane Newman: And what was the definition of insensible? I think that's interesting. So was that part of the ICIQ?

Kristine Talley: It is part of the ICIQ, and that's when people will leak urine without any warning—like they don't have an urge, they don't feel the need to go. And that is more common with radiation treatment and combination radiation and surgical treatment. But that's also common in heteronormative populations. So physiologically, we would not expect a difference in prostate treatment impact on the type of incontinence that may develop, but it's more about once they have it, how do we tailor our approach to providing those strategies to help them get the best outcome for them?

Diane Newman: The other thing that your research showed is, again, incontinence with sexual activity—with climax and that. That is so often missed, and that is such a bother to men, whether they're heterosexual or gay. I mean, they usually report it at the time of climax or with an erection. And I don't think that's also something that is so missed.

Kristine Talley: Oh, definitely missed, and definitely something that our men were very willing to tell us about in here. And also in a previous survey that we did, climacturia came up as a very significant concern for these men after prostate cancer treatment.

Diane Newman: Yeah, and I think what I'm hearing is it deters any type of sexual activity because you're so worried about leaking. And that's something that—I don't know. I mean, incontinence is brought up preoperatively or pretreatment, but I'm not so sure it's really broken down to maybe when it does occur. And I think that's why it was really—I could see why that came up as a significant bother in this population.

Kristine Talley: Yeah, and our findings are suggesting that as well. And I should also remind people, though, that anywhere from 25% to 35% of men, whether they're gay or not, treated for prostate cancer do report these persistent urinary symptoms over time. So we have about a third of prostate cancer survivors that are dealing with this, and I'm not sure that they have access to treatments that might help them improve their symptoms.

Diane Newman: And the other thing, too, that is missed is you have urgency incontinence there. And with aging, it doesn't matter whether they have had prostate cancer treatments or not—people develop overactivity of the bladder. And there is medication for that. And I know that we see it more with someone who's undergone radiation therapy for their prostate cancer, but it's there, and it's again not brought up because there could be some treatment that might help that. So those mixed symptoms—we say it's always stress incontinence—those mixed symptoms are reported by many men.

Kristine Talley: Yes, the mixed symptoms are particularly in those who have had radiation and surgery together or just radiation. And the overactive bladder is definitely a symptom that we need to ask about and also treat.

Diane Newman: Now, you know, I know your research was also on sexual symptoms. Are you publishing any of that, or have you published that?

Kristine Talley: Yeah, we haven't published—yes, we do have some. So on our reference page, we have an article on some of the primary outcomes of the RESTORE intervention. And there, it does talk about sexual dysfunction and urinary function. And I think some of the findings that we found were that they weren't necessarily having worse—well, no. One of the findings we found was that they were less likely to seek treatment for their symptoms, but when they do seek treatment, they're more proactive about getting those treatments.

So we are seeing some differences there. Like they might be hesitant to seek treatment, but once they do seek treatment, they're fairly aggressive in how they want it treated.

Diane Newman: Well, I really have to commend your group for asking about both the urinary and the sexual function symptoms, because I think that's so very important, and especially in this really unique population. So thank you so much for presenting this.

Kristine Talley: Great. Thank you.