Common Doesn’t Mean Normal: Rethinking Urinary Incontinence Care

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Daniel Simon, MD: Thank you for listening to another episode. Today, I am happy to be joined by two guests, Doctors Adonis Hijaz and Gautham Rao.

Adonis Hijaz, MD: Thanks for having us.

Goutham Rao, MD: Thanks for having us.

Daniel Simon, MD: Dr. Hijaz is a board-certified urologist at University Hospitals. He's the Director of the Center of Female Pelvic Medicine and Surgery and the Vice Chair of Academics and Research for University Hospitals Urology Institute. He is also the Lester Persky Professor of Urology at Case Western Reserve University, and he specializes in a wide range of urological disorders and treatments, including female pelvic disorders, pelvic reconstruction, and robotic assisted prolapse surgery.

Dr. Gautham Rao is the Jack H. Medley Professor and Chairman of the Department of Family Medicine and Community Health at both University Hospitals of Cleveland and Case Western Reserve University. He is a health services researcher with an interest in improving primary healthcare delivery, especially for the identification, evaluation and management of cardiovascular risks.

Well, two stars of our health system. Before we begin, I'd like to get some personal stories from you. So, let's start with you, Adonis. How did you get into medicine? Just take us a little bit on your path. How did you get here as well?

Adonis Hijaz, MD: Getting to medicine was something that I was passionate about, even growing up in Beirut; during the difficult times of Beirut when I was in college. Getting to Cleveland was to do training in female urology. Little did I know that I was bitten by the bug of research and academics.

And rather than going back to my home country at that time to practice in female urology, I decided that this is the place I want be. And I joined University Hospital in 2005. At that time, under the leadership of Dr. Marty Reznik. I really wanted to build a career in academic medicine, and Cleveland has been our home since then. And I'm glad that I made that decision.

Daniel Simon, MD: We're very glad that you made that decision, and it's nice to hear that you have a year up on me. So, you're my senior partner here. I'm only 20 years and you're 21 plus, so that's great. So, Goutham, how about you take us on your path.

Goutham Rao, MD: Yeah. So, it isn't that different from Adonis. I grew up in Halifax, Nova Scotia, Canada, and was very passionate about medicine from the beginning. Went to McGill Med School, did residency at the University of Toronto, and then I practiced in rural northern Ontario for a year in the wild, in basically in the wilderness.

When I went to my first conference, I got turned on to academic medicine, so much so that one of the attendees at a conference said, "Talk to my colleague in Pittsburgh, Pennsylvania about a fellowship." And I said, "Okay." So, I did it, and ever since then, I've been passionate about improving healthcare delivery, health services research, clinical epidemiology.

I came to Cleveland from the University of Chicago where I was for five years, primarily their research director in family medicine and community health, and have loved it ever since. So, I'm not quite as senior as you guys. I'm coming up 10 years this summer, so I've been here for quite some time.

Daniel Simon, MD: Well, that's great. And you know, it's so, it's so nice to have the richness of backgrounds from the Northwoods of Ontario. I mean, Goutham, as you know, I go fishing every summer in Algonquin Park, which is not quite the Northwoods of Ontario, but beautiful and very deserted. And then to have you, Adonis, from, Lebanon and, and all the experiences that you had from that. So, that's really great.

Okay. So, let's get into a little bit of the, as we say, the meat of the conversation. And although Goutham, as you know, is an expert in cardiovascular and obesity and other very important areas, we're going to focus today, because Adonis is here on urinary incontinence. It affects nearly sixty percent of women, yet it's often underreported and sadly undertreated.

So let me talk to you, both of you, and we'll start with you, Adonis. What gaps in current care motivated the launch of the EMPOWER study, and why did you feel that primary care was the right place to intervene? So, we'll start with you and then get Goutham in.

Adonis Hijaz, MD: the EMPOWER study was essentially developed in response to the management of urinary incontinence initiative by the Agency for Health Research and Quality. And we put together a group to respond to that initiative and address the gap. So, as you well said, on one hand, you have a very prevalent condition, up to 60% of women have urinary incontinence. On another hand, you have therapies that are very effective, including non-surgical therapies that are available for the management of urinary incontinence. But the sad story is that, only 12.5% of women with urinary incontinence receive care. So, there is a big gap between the prevalence of the condition as well as the management of the condition.

And now one other thing, as you said, it's underreported. Only 25% of women, come forward and describe the issue of urinary incontinence to the primary care physician. And when they do, less than 50% are managed and their problem is addressed. So, there is a definite need. And to answer your second question is why primary care physician offices or primary care physicians. I think because primary care physicians are the gatekeepers in our society, and because there is opportunity to - if we want to improve on the delivery of care - is to empower our primary care physicians, address some of the barriers. And as we well know, there are patient-related barriers, but there are also provider-related barriers.

So, there is data that supports that despite our education about urinary incontinence, unfortunately, the adherence to some of the recommendations on the management of urinary incontinence by the primary care physicians is poor to moderate in some respect. So, there is definitely an opportunity for us to intervene and to improve on the management in the primary care setting.

Goutham, any comments?

Goutham Rao, MD: Yeah, thank you, Adonis. I think you've covered most of the things. I am the principal investigator of an AHRQ-funded diagnostic center of excellence called UH ADVANCE. And UH ADVANCE's mission is to develop, implement, and evaluate best approaches to diagnosis. So even though I don't have any expertise in urinary incontinence, this problem is right up our alley. It's underdiagnosed. It's badly managed or poorly managed across the board in primary care where most of this can be managed successfully. So, it's exactly the kind of problem we're looking for. Empowering refers to empowering both patients and providers, and we'll get into this a little bit more.

So even though urinary incontinence may not be, you know..and I'll talk about my own rather meager management of the problem going forward, but it's exactly the type of problem that I'm very interested in.

Daniel Simon, MD: So, you know, you've both identified the fact that 60% of the women have the problem. It's underreported, undertreated, and then I think you'll talk a little bit also about the enormous time gaps that it takes even when it is reported of how long it takes to treat. So, let's get onto a little bit of what EMPOWER is doing.

It's been described as a multifaceted minimally burdensome approach embedded in primary care with large-scale screening, nurse navigation, and even a chatbot. But, you know, tell me in practical terms, what does this model look like for a typical primary care practice in a patient? What exactly happens that's new in EMPOWER?

Adonis Hijaz, MD: So, most of the studies that went on to improve on this gap incorporated the obvious, which is screening, because we know that it's underreported. So, if you screen, then you can increase the reporting on the diagnosis of urinary incontinence.

And a lot of big scale studies also incorporated what we call education. You educate primary care physicians as well as patients. I think what we envisioned also would be critical for the success of intervention because a lot of the other interventions didn't really do much in moving the needle.

So, what we incorporated is that we want to make sure that the intervention is the least burdensome to the primary care physicians. And this is because we understand how much they have to deal with on a daily basis - to add something more to their plate. So, we want to create something that is less burdensome to them.

And for that reason, we added the nurse navigation and the chatbot as two, our minds, effective therapies to help navigate the patients through the care pathway. So, if the patient comes to the primary care physician and is diagnosed or declares that she has urinary incontinence, in their toolbox they have the ability to take a patient through the care pathway with the aid of a nurse navigation or a chatbot if the nurse navigation is not available. And we can talk more about what our results showed us.

Daniel Simon, MD: So Goutham, EMPOWER embedded this routine screening and management tool directly into primary care practices across Northeast Ohio. How did this change conversations between patients and providers? And what surprised you most about how women responded when they were screened? I mean, was this the kind of thing that you see in hypertension and obesity? Was it different? Tell us about that.

Goutham Rao, MD: Yeah, so that's a great question, Dan. So, when you think about, you know, sort of the big seven or eight things that I deal with, COPD, asthma, heart disease, diabetes, hypertension, cholesterol, depression and osteoarthritis and low back pain, every single one of my patients has one of those or the other. And it so happens that many of the women have urinary incontinence as well.

We haven't had the time, the motivation, or approached the issue with any sort of sensitivity. So, I would say, the EMPOWER is truly transformative in terms of those discussions. So, you screen, and once you screen positive, of course, a woman who screens positive has some expectations.

Well, I've just reported this rather sensitive piece of information to my physician. What's he or she going to do about it? The physicians themselves are having those discussions, I think, in many cases for the first time, including me. And, and I remember when Adonis and I put this grant together, my management of urinary incontinence was a handout from the American Academy of Family Physicians and a prescription for oxybutynin. That would be about as sophisticated as I got. I didn't know much about pelvic floor physical therapy and all the surgical treatments that Adonis has expertise in. So, I'd say it's been really transformative, and our data shows that these discussions are taking place much, much more often than they were before.

Daniel Simon, MD: So, you mentioned that there's been a big delay in treatment. It used to take an average of four years to move from symptoms to treatment. Did the study shorten that timeline? And did it provide, I guess you would say, Adonis, tools for what the primary care doctor could do, and then when did they need to refer to you? Because obviously your access is limited in the sense that there are thousands and thousands of patients. So how does primary care get involved, say, in step one, two, and three before they send them to you?

Adonis Hijaz, MD: Did EMPOWER shorten the duration between onset of symptoms and care-seeking behavior? We have not measured that, but I can tell you that we…based on screening over 15,000 patients in the primary care setup…we identified that around 57% of these patients had urinary incontinence of some kind. In addition to that almost 50% of these patients that were screened have moderate to severe incontinence. And when we start the dialogue and we start talking about urinary incontinence, and when patients know that this is not usual part of aging, as a society, we tend to normalize "common." So, I think the message that we have been really advocating here is that if something is "common", it doesn't mean it has to be normal.

So normalizing "common" is one of the outcomes that we were hoping that we could address, in a project like EMPOWER. Now, Goutham did shine some light on the physicians and their perspective, the primary care physicians or the providers and their perspective on the management, and we have data to show that physicians who participated in our echo training sessions, they were more confident in the evaluation of incontinence, in the management of incontinence, in the prescription for medication for incontinence, in referral of patients to specialty as well as to physical therapy. Whereas in the past, when 50% of patients, when they bring up the topic - their problem was ignored to some extent - now we are addressing them.

Goutham Rao, MD: If I could just add to Adonis' comments. I mean, you know, a lot of primary care physicians that I spoke to initially would say, "Well, this isn't a life-threatening condition. I've got so many other things I need to deal with. It's way down the list." True, but here's, here's a few basic facts.

If you can talk to your female patient about urinary incontinence you can talk about a lot of other things. You can talk about her depression, sexual health, menopause, whatever else happens to be. So, it engenders - it breaks through some of those barriers immediately. Plus, the other thing is it really engenders a lot of trust between the primary care physician and the patient. You've helped me with a very sensitive problem, so I trust you on a whole, a whole range of other issues. So, it has a kind of a snowballing effect in terms of the quality of care we provide.

Daniel Simon, MD: So, Adonis, educate us, you know, for our listeners, because they might be worried about saying, "Look, I don't want to come forward because I'm not interested in surgery." How effective is pelvic floor rehab and, say, medication therapy to at least improve urinary incontinence? What percentage of patients can avoid surgery?

Adonis Hijaz, MD: The majority of patients, especially when they come in early, and there is data to show that if you present early in the management of urinary incontinence, you can see benefit from physical therapy and from behavioral therapy. And actually, what prompted the whole management of urinary incontinence initiative by AARC was a systematic review that the Patient-Centered Outcome Research Institute conducted that showed that physical therapy, behavioral therapy has a significant improvement in the management of urinary incontinence that sometimes equal and surpasses medications, in certain aspect of incontinence.

And that's why AARC created initiative with the intent that we try to spread the knowledge to the primary care physicians so they can start their patients on the journey of the care pathway. Now, how effective it is, it's really variable depending upon the severity of incontinence.

But if you early on present with urinary incontinence before it becomes significantly severe then the success rate can be noted to be significant. So north of 50% improvement in urinary incontinence could be achieved with pelvic floor physical therapy.

Daniel Simon, MD: That's really great to hear. So, you've taken the lessons now of EMPOWER, Goutham, you put your broader primary care hat on. I guess I would say two things. One is this scalable across-- okay, you screened 15,000, we have 1.3 million patients, probably 55% are women, so we're talking over 500,000 patients. One, is it scalable for urinary incontinence? And two, is this method of EMPOWER able to be applied to other things that aren't screened well? So, the lessons that you've learned with navigators and chatbots and things.

Goutham Rao, MD: Yeah, so, it's a great question, and the answer is basically yes. So, what EMPOWER allowed us to do is to figure out what actually works. And so, Adonis, was hinting at this - the chatbot wasn't all that effective. The nurse navigator, that human touch was really, really effective. Now the chatbot, if you are following the developments in AI, is like that's from the 19th century basically, and what we have now is radically different.

So, I think it's scalable as long as we allocate our resources appropriately. Imagine that you get a phone call that's actually an AI-based phone call that asks a female patient, "I know you've got an appointment for your migraine headache tomorrow, but we just wanted to ask you a few questions about another problem that's very important to a lot of women, and it's urinary incontinence." A summary of that call is sent to the physician. I already use the AI note summary program, for example, and it says something to the effect of, you know, "This is something she indicated she would like to discuss with you." So, there's something that is relatively inexpensive and can be scaled across the system, and it can be used for a number of problems that are underdiagnosed and undertreated for sure.

Adonis Hijaz, MD: As a follow-up to EMPOWER, we did start an initiative here at University Hospital where we embedded the - what we call International Consultation of Incontinence screening questionnaire within our EMR, and we had those screening questionnaires be presented to patients when they come in for their annual check with the primary care physician and OB-GYN office.

And we started this initiative in December of this year. Up till now, over 130,000 women were presented the questionnaire. The completion rate, which is-- this is a very interesting comment, the completion rate was 20%, which is significantly high in the screening, And the results from just looking at these 20% patients who completed the screening, it verifies the same results. Over 48% of patients that were screened in the primary care physicians and OB-GYN offices had urinary incontinence, and over 42% of these patients did have moderate, severe or markedly severe urinary incontinence.

And now, it's not enough to screen. I think once you screen/identify, you want to empower patients in the ability to act on it or empower physicians. So, we have some OPAs that follow through. Now, the effort continues to be is that we have to continue to work with our primary care physicians when the OPA fires and the patient does identify that she has moderate to severe incontinence to act on it to either refer or address. But I think - I can also wear my research hat because there is also an opportunity to take this model that we've created here, like Goutham said, and utilize direct-to-patient screening and empower patients to make an appointment directly with a continence platform.

So that's a principle that we were thinking about submitting as a second follow-up grant with the help of Goutham, and hopefully we can take that model if it's successful and, and translate it and expand on it.

Goutham Rao, MD: I just wanted to add a couple of things that Dan, you had mentioned and Adonis had mentioned as well, that 60% have the problem. The vast majority are underdiagnosed. Most women don't discuss this. There has been no progress on that front Ever since I was in med school 30 years ago, right? So, this is really quite transformative in the sense we are approaching a problem that nobody was taking seriously until fairly recently. So that 20% completion rate, that high rate, high prevalence of urinary incontinence are things that we are tackling systematically for the first time.

Daniel Simon, MD: Well, listen, I want to thank both of you for joining me today. I think that it is imperative to listen to you and to be very optimistic that the combination of compassion and creativity, especially as you point out in just asking questions that people haven't asked before, could be transformative for their health.

So, thank both of you for coming today. Thank you for listening today.

To learn more about research at University Hospitals, please visit UHhospitals.org/UHResearch.

Thank you, Gautam and Adonis.

Goutham Rao, MD: Thanks for having us.

Adonis Hijaz, MD: Thanks for having us.

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