Chapters Transcript Video How can we improve bladder health in women - Opportunities for education and intervention Leslie M. Rickey, MD, MPH So I'm very excited to kick off our ERPs month of grand rounds, and we are today, we're featuring Doctor Leslie Ricky. She is at Yale, um, so she made her way through Tulane and then Loyola, um, in Maryland, and now she's been at, um, at Yale since 2013. And uh she's a full professor there. Um she is the program director of the um neurogynecology um uh dual fellowship, similar to ours, um, who take uh OBGYN and neurology and uh really has been a great mentor for me. So we're very excited to hear from her today. So welcome, Leslie. Thank you. Thank you, Katie, and thank you for the invitation. I was really excited to get it and I'm, I'm going to be talking to you about, let me share my slides here, but kind of pivoting from our very um treatment focused, um, approach in neurogynecology and neurology to more of what can we do to try to prevent lower urinary tract symptoms in women. So I'm gonna share right now. All right. And can you all see my screen? We can, yes. OK, great. All right. So let me just get up this other mode here. All right, so these are my disclosures. So I'm going to be some of y'all may be familiar with the Prevention of lower urinary tract symptoms Consortium, which was, I'll get into in a minute, so I'm going to be going over that, what the work has been over the last 10 years. The funding just wrapped up for that consortium, and then talking about bladder health education. So I'm just going to briefly review, you know, we're very acutely aware of the individual impact of lower urinary tract symptoms in women. We see these women in our office every day, but beyond just the individual impact, there's also really enormous societal and economic impact. So overactive bladder alone is estimated to increase from $42 billion in cost to the health care system to 82 billion. You know, up to 2020, recurrent urinary tract infections we know are a large problem and that also has a large financial impact. And also from a work productivity standpoint, Lutz has been shown to be associated with decreased work productivity. So there's also some costs that are hard to measure when you look at some of these cost models, but also just that it really impacts the day to day ability of people to get their work done. We also know that um there's many comorbidities that have been linked to lower urinary tract symptoms. The NIH um had a seminar, I think a year or two ago called The Hidden Burden of Luts in men and women and how it is associated with some of these other comorbidities. But even when you control for age, race, and these comorbidities, Lutz independently predicts increased ED visits. So these are just some things that we might not be aware of as um clinicians, you know, treating the individual. but there really are some larger impacts and so I think trying to think of of Lutz is more of a of a public health issue and what we can do to address it could could have some cost savings and when you're trying to engage your healthcare system of why things are important, it really does come come down to money and financially it's a big problem. So, uh, this, just to orient you, you know, our current clinical strategy has appropriately been a urologists and neurogynecologists to really have, um, as a symptom and disease focus and our measures are, it's important to have high diagnostic. Precision because you're choosing surgeries and medicines and clinical treatments that can have side effects that can have complications, so we need measures that decide that precisely diagnose the clinical issue um the um. Not the problem with this, but since this has been the focus of clinical and research strategies for for decades in the US, this really just does reach the most affected proportion of the population, which you can see over here on the left side of the graph. The most disease, not, not just the Disease patients, but also those that have an awareness of their condition and also access to get into the clinic. So it's had a very clinical strategy. A prevention strategy seeks to phenotype the entire population. So if you're going to work on prevention, you have to be able to codify. The bladder health experience, if you will, of an entire population so that you can start to say, OK, we know these diseased people. What about the people over here? Who are the people that are healthy over time? Like what might make them move along this curve towards, you know, bladder disease or bladder dysfunction? And and then if you can increase the people on, you know, the healthy side of the curve, you can maybe shift the entire population. So you need a way to quantify bladder health across the entire population. You need to identify risk and protective factors once you know, once you have a way to measure the entire population. And then you can start to think about what are some prevention strategies that we can use, and the benefit of this is your reach can extend to the entire population. So this is more thinking about how do we shape policies, how do we, you know, people spend a lot of time using their bladders in places outside of their homes. What do those other places look like and how can we help with their bladder health? How can we integrate this into healthcare systems? So It's just a different, it's kind of flipping it a little bit, as I'll tell you in a minute. So the prevention of lower urinary tract symptoms was funded by the NIH and the NIDDK and it was established in 2015. It it was, it just wrapped up in June, but it was 7 clinical research centers across the United States, and Yale was one of them, and then a data coordinating center at University of Minnesota, and the goal was to Um, lay the foundation for prevention science. So you can't just go in and get a huge big grant to say like what Leslie Ricky thinks is important to prevent bladder symptoms. We didn't, we don't have that information. All we have is really treatment and nothing about prevention. So the goal of the consortium was to lay that foundation so that then the next generation of researchers can come in and start thinking about what are some prevention intervention strategies that we could think about. So health versus disease is you really, it's really flipping the paradigm and so you need to think about it in a different way. You need a new approach and a new measure. You can't just because you might say, oh my gosh, we have so many luts measures and surveys. Why do we need another one? So I hope over the next, you know, first half of this presentation I'll convince you how they are different. The other thing is, you know, doing this kind of work, yes, you do need the clinicians where we're in the room, but we're the content experts. You really need all these other specialists that have public health background, that have community health science backgrounds, epidemiologists, health communication. Once you have these results, how are you going to communicate it to the public? Just because you know what you're supposed to do doesn't mean that people do what they're supposed to do. As we all know with cardiovascular diabetes health, those, those um recommendations have been in place for a long time. There are people that specialize in how to effectively, um, um, A design behavioral intervention programs. So also we wanted to take a life course approach. So you'll see people in here. We had people with experience in adolescent health and geriatricians because Lutz doesn't just affect one portion of women's lives. It really is across the lifespan. So there's like 50, 50 different investigators and with this whole wealth of experience, but you can imagine it's a little tough to get all these people in the room and come to consensus. So it took a lot of Not not just, not, not just like what is bladder health and how do we define it, but also how do we work together as a team. So that, that's a whole different conversation, but that was for sure a journey. So first we had to start off with defining bladder health and we took the WHO definition of health and um revised it for bladder so we. decided it would be the definition was a complete state of well-being related to bladder function and not merely the absence of luts. I'll show you that just because you say you don't have luts doesn't mean you're not planning around your bladder. And not only that, not just from a symptom standpoint, but healthy bladder function permits you to do what You want to do during the day in the workplace, in the physical activity space in your social life. It allows optimal well-being. I will say a complete state of well-being related to bladder function is aspirational, but this is the goal. This is, this is optimal bladder health, and then after we have the definition, then we could come up with how we were going to measure it. So um one of the things is when you think about, so health is something you don't think about, right? Like, so when. When your knee's not hurting you, you're not like, Wow, my knee feels great on my run today. Like if it's, I mean if you're getting over an injury, you'll be enormously grateful. But if it's never hurt you before, you don't think about it. So same thing with bladder. When you think of bladder health campaigns that we see from national societies, you'll see the tagline like bladder Health Month, and the first thing under it will be incontinence. I mean that's not bladder. Health that's already getting into lots. So it's kind of the yin and the yang. So these are just some, there was a bladder health campaign we did several years ago. So when your, when your bladder's working well, you don't think about it. So it doesn't wake you up at night and these are things we've all heard in our clinic for people that see women, you know, um, I'm able to go out with my friends and not worry about leaking. I was able to. Go through a movie, I could sit through a meeting and not have to get up and I was able to run without leaking. These are all with the flip side of this, when people can't do this, these are the things they can't do. When you're able to do this, you don't think about it. So how do you make a measure that's not only responsive to people with symptoms, but for people that aren't really thinking about their bladder because it's not bothering them? The other thing is we have all been trained and we've all focused heavily in medicine, not just in neurology in Uruguay, but everywhere on this very center part of health, I think, and treating people with, with medical conditions. But we know now that about, I think the percentage is like 85% of one's health is actually determined by their environment. It's outside the individual. So if you think of the bladder, like that bladder lives in a in a person. Who has a pelvic floor, who's in a family, who's in a community, who's in different environments during their life. So what are not just the, yes, the biologic factors are important we know that, but what about behaviors? What about the bathrooms and the schools where they are? What about what their family has taught them about how the bladder should work? And then how about when you go out to the airport, when you go to social places, when you're out in world, what are some of the policies that affect how you think about your bladder and how you're able to access things like, like toilets? So we wanted to be able to measure all of this. There's been lots of studies done about risk factors for lower urinary tract symptoms, but not only do we need a novel measure, but if we really want to look at risk and protective factors, we need to think outside of the individual and what are some of the other factors that could could affect their bladder health, especially when you think about I mean, the bladder's a funny organ, right? We use it over and over and over again during the day and we use it intentionally and a lot of it is based on our environment. So some of the decisions that you're making about holding, not holding, you know, different things you're doing every day over and over again, and then your decision making and your behaviors get tweaked in that too, because that's going into every time you toilet over a lifetime, you can see how this is going to affect your bladder health over time. So we took that that social ecological model and then brought in biology down here and also the life course. So when you think of individual interpersonal, institutional, and societal things that could affect the bladder, you also have to take into account, of course, comorbid conditions, UTIs, the microbiome host response or this. Diosis type factors that can affect it, the hormonal environment, especially in women, exposure to medications, and then those are going to change over a lifetime from adolescence to young adult to midlife and older. So all of these areas are things that really need to be looked at if you're going to think about some prevention intervention strategies. You really can't just focus on one. So Rise for Health was the longitudinal study that plus carried out, and this was the culmination of almost a decade of work, right? Like first you have to come up with a measure this, this bladder health scales and bladder function indices that we um that we developed. Uh, we also, as I was saying, your, your knowledge attitude. And beliefs and your behaviors are going to affect your bladder health. So we came up with a measure for that. We also had a subset of in-person assessments for a proportion of women that lived around the clinical research centers that included not just, not just pelvic exams and like post void residuals, but also some measures of muscle. skeletal health pain, some measures of frailty, you know, get up and go, those sorts of things, and we had almost 2 years of, of data. So we had the original cross sectional study and those data that's been published, but then also we have some longitudinal data now and those papers will start coming out over the next year. So just to show you some sample items from the bladder health scales, these are not necessarily focused on urge incontinence or stress incontinence, but more how again remember it has to be responsive to an entire population. So you can see here some of the stems and responses are a little unconventional when you think about traditional lower urinary tract. A questionnaires, but which of the following best captures how you feel about your bladder? Everything from it's pretty good, it works well enough to it's terrible. I got a lemon, I want a new one. These were not terms that we came up with. This was from focus groups that were done with women, and then there was extensive cognitive evaluation that went on, meaning one on one interviews with. Women with a range of symptoms, whether it's recurrent UTIs or incontinence or overactive bladder and then along that range and people with no symptoms, mild to severe to make sure that there was a response for everyone um and so also when you think about, for instance, travel. An example on this last one, people will restrict their travel or their activities in a number of different ways if they're bothered by their bladder. There's a difference between whether you just are going to use your own car to get around town, maybe a toilet that, maybe you don't, whether you're willing to use public transportation and then long distance. I think all of us probably have. Um, patients who get really nervous about being on a plane or a train because of their bladder, that's a little different than someone that just might toilet map around town. So we really tried to codify everybody. Um, this is just to show you there are about 8, I think, bladder health scales. The global perception of bladder health is the one that we decided as a consortium would be included in all studies, and that first item on the page before is an example of that. But then there's also different scales that someone could use for their research depending on what they're looking at. There's one that specifically at physical activity, intimacy, travel, emotion, those sorts of things. So it can be used all at once or you can use individual scales. The bladder function indices, I just wanted to show you because um it's the, the terminology is the flip of lot. So instead of pain there's comfort. It's more like how easy does this happen for you, how easy is this for you. is like in the last 7 days, how many times have you leaked? This is going to be more of a longer term. In the last year have you leaked even a drop because there are some people, believe it or not, I know we don't see them, who never leak, you know, like they might be a little bit younger, but they will say in the last year I have leaked not once, and that's probably a little different than somebody that like um maybe says, oh, you know. Now that you say it, in the last year, have I leaked even a drop? Yeah, maybe several times, you know, and so that allows you to start to have a separation of people along that bell curve. The last thing that I want to show you is we decided early on that we We actually originally had these adaptive and coping behaviors included because we wanted to make sure we had a sense that some women might not report symptoms, but they might be using these coping behaviors. And I don't know how many of y'all have seen people in clinic. That say, um, you say, oh, do you leak urine? And they go, Oh no, I don't leak urine. And I'm like, but you wrote down you're using 3 pads a day. Like, why are you using 3 pads a day? And that's like, oh, they say, oh, so it doesn't get on my clothes. And I'm like, well, that's, I think that's leaking. But they consider themselves as not leaking because they're self-managing. And they're, they're, they're using something protective to let them do what they want to do. So we, we included these adaptive behaviors so that we would just have a way to further adjust for their reports or make sure that, you know, maybe we're wrong. Maybe everybody says they don't have any luts are not using any adaptive or coping behaviors. But what I want to show you here is the, this is, this is 5 of the bladder health scale. So global holding efficacy, this is efficacy avoiding. Effect on social occupational activities and physical activities. So you can see here, so when the bladder health scales, higher numbers mean health, lower numbers mean disease. So you can see that these are all skewed to the left where there's more people reporting health. So the, the one on uh this, this one here on the left is just the bladder health scale. When you include the adaptive behavior and an adjustment to it, look how many more people are in the disease portion. It distributes people over the scale of bladder health much more easily, and this just wasn't in the global. This was in every single bladder health scale. Once you started asking people about do you wear pads, do you toilet map? And you adjust the bladder health scale responses for that, you get a, you, you can see that there's more people, um, not everybody's lumped over here in the health side. So, um, also just to show you again, so if you look at the full study population and you look at their unadjusted scores, you can see here using global as an example on a scale from 0 to 100, their score was 72. Once you ads. for adaptive behaviors, the score went down to 55. So it's really important to include this when you're looking for a health distribution. Not really important if somebody is coming to you with symptoms because we already know they're using adaptive behavior. I mean, they're there to see you because they have the symptoms already. Even when you look at participants that said they did not have any lower urinary tract symptoms, as you might expect their scores were higher, they should be. The global score was 72 in the full study population, and patient without Lutz, it was 88, so they had a higher bladder health score. However, when you adjusted for adaptive behaviors, even in the healthy I don't have Lutz group, their scores went down. And if you look down these columns, the range in this in the score went down for just about everybody. To look at this another way, when we asked about adaptive behaviors in the full, and so this includes using pads and it did say specifically for incontinence because we know that women use pads also for menstrual health and so you got to make sure you specify it's for incontinence, toilet mapping, staying close to behavior. I mean this is pretty shocking, but in the full study population, almost 2/3 used any. Even when you ask participants with outlets, 38% are using some self-management behaviors, which is like I think mind boggling that almost 40% of women that say they don't have any urinary symptoms are doing these things already. So I think These data, I hope, will show you that I think this does support bladder health as a separate measure from Lutz, and what I think really is going to be the focus of prevention strategies is there may be like a pre-lutz population, almost like you hear about pre-diabetes or pre-hypertension, that are having subclinical. Bladder experiences, so they're they're incorporating some behaviors probably most unconsciously. They don't perceive themselves as having a problem and they don't necessarily have a problem, but some of them are probably going to move down that curve to disease and some might stay where they are. So identifying this group of women and starting to develop some intervention strategies to prevent them from sliding into disease might be the sweet spot, and I think this is probably one of the most important things that we've discovered. So I'm gonna move now into, OK, thanks. Like, so there's this population, what can we do maybe to, to, to help them stay in the pre-lutz or healthy bladder state and not get into the disease bladder lut state. So there's been a lot of this work done in other chronic diseases as you get like diabetes, osteoporosis, cardiovascular disease. There's really like zero for bladder and lus. But from these other chronic disease states we do know that key strategies include enhancing knowledge, which is awareness and information, but as I said before, that alone is not enough. I'm also increasing something called agentic beliefs, and I'll give you an example of this in a minute, but agentic beliefs is self-efficacy over your health, believing that there are treatments that you can engage in those treatments. So these, these knowledge and agentic beliefs are really closely intertwined, and you need, you really do need both in order to have an effective prevention strategy. So I'm just going to talk for a minute about a agentic beliefs. We um hopefully we'll have a paper published soon about this, about the relationship of knowledge and bladder health and the relationship of agentic beliefs and bladder health. So we found that while knowledge alone did not predict bladder health, that a higher level of belief and incontinence is treated. and or preventable was associated with with better bladder health. Agenive belief questions are more like this where there's not a right and a wrong, it's more just what somebody believes, and there's a scale from like um you you strongly agree with this to strongly disagree. So things like urine leakage is a normal part of aging. That it can't get better um whether or not you believe that there are treatments for it, whether or not there's there's prevention strategies for it, and whether or not women think that they can do something to help prevent leakage. So a little bit of like, is this an inevitable part, inevitable part of getting older for everyone or for me there's nothing I can do about it. Just having that. That that belief um will predict. Now we don't know why it predicts better bladder health um because we just have the cross sectional data and we don't know if it'll predict change in bladder health over time, but we should be getting some of that out of the longitudinal um studies that are coming out. And why is this important in lower urinary tract? Well, we already do know that compared to women who seek care, non-care seeking women are more likely to believe that pelvic floor disorders in general are normal. They are unaware of treatment options, and they fear the need for invasive procedures. So we know in the Lutz world at least that this is going to affect bladder care. So the problem is that we don't have formal programming and in the absence of formal programming or getting information from their healthcare provider, women learn from their environment, and this is what women see. I will show you because you might not be able to see very well, but, but the picture on the, the picture on the left says ladies' lounge. The picture on the right says Gentlemen's lounge. This is Radio City Music Hall for those of y'all that haven't been up to New York in the winter. It's really nice, and Radio City. Music Hall has this Rockette show, which is a Christmas show. This is intermission and this is the line at the Women's lounge, and this is the lack of line at the gentlemen's lounge. So, and if I will challenge you, this is to go to any music show or theater, and this is what it looks like during intermission. I mean, you will see the women's line wrapped down the hall up the stairs. Like there is no hope of using the bathroom during the intermission. And the men's line has like nobody in it. So you can see from a very early age, like little girls see this, adolescents see this. Women just put up with it. Like we have for decades just like said, uh, that sucks. I got to wait in line. I guess women have to use the bathroom more without any thought. Of like, maybe, maybe this isn't great, you know, so but, but women see this and girls see this from a very early age. This is your lot in life. This is just how it is for women. And so you can see how it starts to get normalized and people might just think this is the way it is and this is the way society accepts it. So we, we looked at through a bunch of different focus groups, um, how women learn about the bladder function, and they learned through a couple different ways through their environment and this is again this is gleaned from focus group data taken from adolescents that were 11 up to women that were 99 so really across the life course. So one way that women learn is from their interpersonal relationships. Their friends, their mother, their sister, their aunt, I mean, how many people have we seen in clinic that, you know, they say, oh, so and so told me this or so and so had this treatment. Like women talk about this. The problem is, depending on your environment, this may result in normalizing luts. Even in adolescents, tumblers and runners, they leak during those, I mean, we know now, but nobody bothered to ask them for a very long time. We know now that incontinence can even affect. Girls that have never had had gone through childbirth, which is a major risk factor but not the only one, and they just accept it. They just like, yeah, like this is something at the end of the people pee on themselves when they run. And so there can be a normalization early on and also some lay theories may spread this misinformation about how you should toilet, you should squat, you should sit, you should hold it, you shouldn't hold it. This causes. UTIs, this doesn't. So I'm not saying all of it's dangerous necessarily, but this can start to kind of weave this knowledge attitude and beliefs environment that the woman is living in and affect their behaviors and whether or not they decide to seek care. A lot of the, a lot of the women in the focus group said they didn't know about Lutz until they experienced it, like they didn't know it could be a problem until they actually had a, had a problem. And so changes in one's own bladder function also like they look around at social expectations. You know, you're sitting in a meeting like geez, I got to get up and go. Nobody else does. Maybe you're in a meeting full of men, you know, and they don't need to, but you do. And so you self regulate to fit within those norms. But again, this is being informed by your environment, by the people around you, by, by, by toilet access and what that looks like. And while I am very happy that now we see some of these things for UTIs and leaks and you see, you know, women who are like models in their like, um, in, in their things, thongs and everything like this is great, but this can also help normalize it. Like, hey ladies, you have this, just put a hat on and you can do what you want to do. Um, the pro so it is good that some of these protective um. A devices can help you do what you want to do with more confidence. However, it doesn't help prevent the progression of what you have, and we know that about 20% of women that lead once a once a month will progress to once a week over 2 years. So yes, this is good, but we need a little more education of how to prevent that progression from happening. this navigating the toileting environment is a big one, and this happens from the time kids are in school where you're not allowed to have a pass and you get 5 minutes in between your classes to use the bathroom, and we already know that women use the bathroom more for a variety of reasons up to when in different ease of access by men and women, as I just showed. You in airports, in social situations, you know, on up to what your job looks like, like women that are that are driving a bus or that are doctors or nurses or teachers or security guards like can't just use the bathroom wherever they want. There there's gatekeepers that will restrict access and this can also affect your bladder function. And finally, these women thought that when when they thought, when asked what they thought normal bladder function was, they thought it was a bladder that you don't have to think about, that it was absence of symptoms like our definition, and it had a positive impact on your daily activities. It didn't detract from your daily activities. You didn't need to think about it, and they were overall really frustrated by the lack of systematic information. Um, and so one of the things that's sort of sad about all of this, and I'll show you some quotes from women in a minute, is that there is an enormous amount of information about luts and female luts in the literature, and what we know some risk factors, we know the treatments we have so much information and like this does not. Get out to the public. It stays in the scientific literature, and women, it doesn't, you know, socioeconomic status, you know, you have like the Kardashians tweeting about how surprised they were to go home with a pad. Like, I mean it really the lack of information that gets to the lay public about Luts and women is, is also, it's, it's really. You know, kind of sad it's on us to work on getting that out in a more public so the public is getting all this research that we're doing and it's being funded. So I'm just going to use as an example pregnancy and bladder health. We all know that pregnancy and childbirth is a high risk event for development of newlus and new and incontinence. That is not new information that's been known for a long time. And we also know that pregnancy and childbirth is a common exposure. 80% of women have this exposure that we know is a high risk event. However, if you look up postpartum incontinence in PubMed, you can see the accumulation of evidence over the last 30 decades, just getting higher and higher and higher. Yet if you ask women in 2021 and 2025 what they know about incontinence, and this is postpartum patients like these are patients that are engaged, that if, if no, if at no other time during their life anybody talked to them about LTS, surely somebody has talked to them during pregnancy and delivery about the risk for this. I mean even in the after all this information that we have even here very low rates and lower rates in Spanish speaking patients compared to English speaking patients and also based on other measures of race, education level, and ethnicity. So again I think this is sort of sad and I think we can do better. So great. Like, but, but how and where? Just like I said before, just because we have the knowledge doesn't mean that everybody's eating well and everybody's getting 30 minutes of outside walking a day. Um, it's not enough just to know it. You have to figure out effective. Ways of getting that information out. So there are some traditional in-person modes of delivery like in the clinical setting that's what we all think about. But what are some more public health ways that we could get this out schools and community settings also we found in our um. We there were through the focus group data there were a few papers published on what do women want to know and how do they want to get it. And as you might expect, it varies over the age range. The older women want like pamphlets in the doctor's office and the younger people want, you know, to use social media. As a way to get that information out, so we have to figure out this is where our behavioral intervention is coming in. It can't just be urologists and neurogynecologists figuring this out. You have to partner with your, your public health folks, community people that do community health and community engaged research, and also that look at different ways of messaging. Should you text it? Should you put it on TikTok? Should you do a pamphlet? Should you put it on a monitor in the doctor's office? How do you do this? So there's a lot of areas for research. One of the problems with the clinical setting, and there are some groups that have done a fair amount of looking about how can we integrate what screening into primary care or even gynecology offices. and there's a good amount of data around this. It's, it's quite hard to do, it turns out, even with sticky notes, real sticky notes, virtual sticky notes, epic reminders, emails, and when it comes to the to the primary care setting, like those people are dealing with a lot, like, so you say, oh just screen for this. They're already screening for like 2 things. Um, and unlike things like diabetes or high blood pressure, there, there's not like a lab that you can find out. It's unlikely to be in people's charts. Even women with symptoms don't have it documented in their charts. You're probably not going to detect it on routine office exam, and, and, and you need, you're relying on symptom report, and as we've already shown, that symptom report depends on the woman, their environment, their self-care practices, what they know and believe. So what are some other ways we could try to get this information out? I will say in terms of prevention of luts, the majority of the literature focuses on pelvic floor muscle exercise programs and so there is a little bit of data on that. So I don't want to focus so much on the outcomes of that, um, but, but this group also did semi-structured interviews after completing. of this group-based education and pelvic floor muscle exercise program, this was a pretty low intensity. It was 41 hour sessions that went over anatomy function, pelvic floor disorders, treatments, and just how to do the exercises. And afterwards they, they asked the women, they did these semi-structured interviews and the women felt it was really helpful and that it addressed gaps in their knowledge. It gave them information how to address their symptoms. It helped them speak more freely about their symptoms and it increased care seeking. So I think this was really interesting. I think also like we talked about that that information gets disseminated down. I'm doing a study right now from the PLS data where we're looking at mother-daughter dyads and how that their communication style affects how much are they talking about. Bladder health and menstrual health. These women felt that there was also community value. They passed the information on to their friends. Even women that participated without symptoms felt like they got great information out of it. And although like we always focus on the compliance, how many people did their exercises, how were their lus at the end? But even though like not everybody complied with it, all the participants felt. This should be information widely available to the public. So and I can also tell you in these focus groups, the women, once they started talking like it was just this really great sharing of information and even though it was a study at the end of it more than once, they said, when are we going to do this again? Like they just really liked that, that kind of venue for discussing these symptoms with other women. So where is, you know, some of the younger people on the call or people that want to know, you know, what are some new research ideas? Just think about the clinical set. When you do it, do you put something like I said, a monitor in the what when someone's in the waiting room? Should there be questions during the clinical one on one interaction? Is there some kind of post visit pamphlet they should get? When it comes to the community, where should it be? What should the cadence be? What should the content be? Social media, same thing, timing, content platform. We should probably be partnering with influencers. We know from other studies that, you know, we, we like to think we're sort of fun, but in general in the, in the social media world we're not that fun and people don't engage with us that much. So I think. Um, kind of partnering with influencers who know how to reach people would be really interesting. Same thing with this. What's the design that's most engaging? Uh, you need to get patient input for all this and not just patient but community input, um, so that we're again, it's not a top down. What do we think people like we can help with the content a little bit and. Identify the risk and protective factors so it's accurate, but how it gets disseminated, you really need the feet on the ground. You need the women, the girls, um, with and without symptoms to help with that. And I want to end with just some of the statements that we got from our focus groups. You can see that, and I have them highlighted, these are all different ages. So this is an adolescent that said, I don't think a lot of people knows what happens to your bladder. It would be useful to know about it. Someone that's more in midlife, I didn't know any of these things that could happen until they happened to me. Um, nobody tells us how to keep our bladders in good shape. Um, other women, a lot of women said, I've just heard this piecemeal information. There hasn't been a main source that I, that I trust. And then finally someone who was 65, she said, I go to the, I go to the doctor every year, and I don't remember a doctor ever discussing bladder health or what to do. I don't ever recall even someone bringing up my bladder, um, so I think in conclusion. Um, measuring population bladder health identifies opportunities for prevention across the life course. Education is going to be a key component. We need multi-level messaging, and we need to partner with some of our other colleagues in these other expertise areas to figure out how to, how to best do this. So I want to thank you all for being. Here and listening, I do want to say you might recognize this guy in the middle. This is Pedro Alvarez Soto when he graduated, and I hope that you guys have maybe imbued him with more, more fashion sense than we did during, during our graduation celebration. So thank you everybody, and I'd be happy to take any questions if you have them. Hi Leslie, that was an amazing talk. Thank you so much. It's a great overview. I had a question and I'm sorry if I missed it. It's ravine, by the way. I. Um, I have a question, and, and I'm sorry if I missed this, but did you examine these focus groups and things about the patient's own, or the participants' own education level, how their, you know, racial, cultural identities may affect what they think about and how they approach bladder health? Did you look at any of that stuff? For sure. So, so, yes, and so some, um, and there, there are, there is a publication on the focus group data. So yeah, so that was. Um, there was some quantitative data collected in addition to qualitative and there and also when we did the RISE study, which included knowledge attitudes and beliefs, there are many socio demographic factors that affect what the the knowledge and their bladder health. So the things you might imagine, you know, education level, socioeconomic level. Um, race, ethnicity, age to some degree. So you, so that would be in the focus group data but also in the in the rise for health data, absolutely. Interesting. Yeah, we, we, we've done some of these bits of work in our population, which, as you know, is very largely Hispanic, but it's kind of interesting here in Miami because they tend to be actually at least compared to other Hispanic populations, more educated, uh higher socioeconomic wealth, and they actually didn't have like lower literacy and it it's just kind of interesting to to think about how all these things. Play to how women perceive their health or deal with their health. It's not just, you know, a race or ethnic identity alone at all. No, it's not. It's an interaction between things. And also the other thing what I will say is we spent like a lot of money and time translating the bladder health scales and indices into not just Spanish language but also cultural adaptation. Um, so there was a whole, so the whole thing and so when, when we sent the questionnaires out, they could be completed either online or paper, and you could choose to get it in Spanish or English and even with that we had a really low number of like people who spoke primarily Spanish and we just, we deduced from that that like um there's payoffs when you do these large studies, right, and you're trying to reach like the population. And so despite all of those efforts, it just didn't for whatever reason we didn't get good engagement from that from that population, but um. So there probably needs to be like more focused studies, but they also found, you know, there was also like a pelvic floor, people looking at access and when they, it was, I think it was at Augs or Sofu in the last year or two, that when you looked at a managed care system like Kaiser where everybody has access, that some of those other risk factors fall out, you know. Yeah, definitely that makes sense. Yeah, so it's so interesting to look at these things and, well, I find it super interesting, so thank you. Yeah, oh you, thank you Rabin. Great talk. Thank you so much. So, I mean, so what is next? I mean, you know, the study wrapped up in June, you said, um, you know, as you're going to roll out a new campaign focusing on, you know, bladder health, you know, trying to identify what that is and, and define it um for patients or, you know, or reach out to, you know, the primary care physicians, you know, what, what is next, I guess. So I think, so the charge of the consortium was to lay the prevention like not, not because we didn't have the funding or the time to actually start doing the studies, but lay down the foundation, start to identify risk and protective factors, so then the next cycle of funding. You know, whether it's in the NIH or somewhere else, can start to look at those risk and protective factors and figure out, you know, um, prevention intervention strategies. So I think that's the next phase and some of those that those studies will be published over the next year. And then I think like I said, there's like a variety of things you could look at. Is it going to happen in the primary care setting? Is it going to happen in the community setting, um. And could, could just that global health perception scale be used in the primary care setting as a screen versus just asking right now there's a 3 IQ screener that just asks about stress or urge incontinence, but you know, could, could you start to identify people earlier? I, I, I really don't know about the primary care space. I feel like that's, I feel like it's hard. To get there. And, and also there's people that don't even make it there. And like I said, it's hard sometimes to get to that like pre-lutz or pre-clinical, um, cause people normalize it so much, so. My gut is it's going to be more in the community setting, and I think, I think it really needs to be incorporated into schools also. Schools are like, I mean, they are in these focus groups you had women that were like 65 years old that still remembered like having an accident in 3rd grade because the teacher wouldn't let them go, you know, so I'm not, and I'm not saying it's like on teachers, but we know also that teachers and school nurses who are with like kids for a long time get like no, there's no bladder health education. The it's not baked into the policy at schools at all. That's, yeah, I mean, that's very true, and, you know, just thinking about our patient population, there, I can't believe like how many patients are make it to me as a subspecialist without a primary care doctor. So there's a huge amount of patients that just don't have a PCP um so that's obviously an issue as well. Yeah, that's true. Yep. Good morning. I have a question real quick. So there's a lot of urologists on the call that also, you know, take care of mostly men. Is there anything in the literature that you've seen about these prelus that we can start using for our male patients, just given that they sometimes will present later in middle age and they've had symptoms for 10+ years. Um, I know a lot of the education could happen earlier like in school, but is there anything that you would recommend, like they're coming for a PSA screening and they don't have symptoms or they're not verbalizing symptoms that we could start utilizing at this point. Yeah, and I don't, I'm going to full transparency. I don't see that so I don't have as much information on that side, and I think also. And I don't know this, but I think when men develop luts, they're more likely to develop it later, right? Like I don't think you're going to have male 18-year-old runners that are leaking necessarily, so I think it's going to be older, but I do think that even, even then trying to identify, like I think men normalize it too, like they all talk, right? Oh yeah, I get up 3 times a night, and, um, and, and they start, especially the urgency frequency, the OAB symptoms, I think can start sort of insidiously. Um, we do know that men with incontinence will, will seek treatment earlier than women. Yeah, so I think on the one hand it's not normalized as much as femalelus and so when it happens it's a little bit more like, oh my God, what's going on? Like I need to get treatment. But like you said, other, other guys have been dealing with it and you know, for 10 years, so. I think you could probably use the bla. It hasn't been validated in men, but I think like that bladder health scale, just in general, how do you, how well do you perceive your bladder's working and like what is it affecting? Is it affecting your social or, you know, your sleep or? Intimacy, I think that could definitely be incorporated. I think the bladder health scales, my, my guess is at some point someone will um validate it and then as well to see if it, if it works similarly, and I, I think some of the scales will, I'm not sure if all of them will, but that would be another good study for someone to do. Thank you. Yeah. Doctor Ricky, it's great seeing you again. This is Pedro Alvarez. Um, hey, it's also great seeing, uh, Rin, Katie and Ricky for those, um, on the call who don't know me, I'm Pedro Alvarez, I mean you're gonna call it the CIU. I'm in the guy department. Also, real quick, I'm on the train, so I apologize is not, um, Doctor Ricky, um, uh, some of the things that you said I thought were really interesting. One was, um, the first part of specifically for patients. Uh, you've seen in this, uh, focus groups, is there any emphasis on postpartum specifically? You said that a lot of these women is the first thing they're hearing us, and on top of that, um, from a ractical perspective, do you think that or have you seen more targeted efforts and races? versus IV patients. Yeah, I think I'm just gonna repeat what I think I heard you were broken up a little bit, but it sounds like you were wondering if the focus groups brought out anything in in pregnant patients and and whether or not there should be um maybe a more focused intervention at this group and I think absolutely, I think um I think some places do it better than than others but you know, it's so hard. I don't completely understand why there's not more education during the prenatal and postpartum period. I know outside of the US, you know, like in the UK and Australia, they get like automatic like pelvic floor muscle rehab after delivery, and I don't think Going to have that mandated in the US anytime soon, but I think just raising the awareness and letting people know there's treatments for it. Like I said, those beliefs play a really strong role. You don't need to know every single thing about how the lower urinary tract works and the success rate of a sling and should I drink water instead of Coke, but if you, if you at least believe there's treatments for it, that's going to drive your care seeking. Um, so we did, we, we are going to be publishing a study on, because we did have pregnant women or postpartum women that, that took, that did the bladder health survey. So we're doing a sub-analysis of that group in particular and looking at it, but most of the existing data on pregnancy and delivery and lots, one looks primarily at incontinence, um, and two looks. At the same measures over and over again like maternal age, pushing, you know, like second stage of labor, how big was the baby some comorbidities, and there's some, there's some other factors too, like we found that some psychosocial determinants of like depression and discrimination actually predicted lots at 12 months and having better social support mitigated those effects. So it's not just looking at the outcome as Novel, but it's looking at some of the risk factors as novel as well, and I think that has to be a place that even though you think like, oh, there's been a lot of research done there, there really hasn't. It's all like pelvic floor muscle exercises and incontinence. So I think there's a lot of work to be done there too. I think that would be a good group to do like targeted focus groups in as well to just see their experience, like what are they talking about, what do they know? It's less than you think. Thank you. All right, perfect. Thank you so much again. I think we all kind of have to run now to clinics and Os and everything, but this is really, really great, um, and super informative for everyone. So a great perspective. So thank you so much. Awesome. Thanks for having me and thanks everybody for being on. I really appreciate you, uh, you being on and listening. Thank you. Have a good day. Have a great day. Published October 2, 2025 Created by
