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Annual Meeting Keynote & Special Lectures
IUGA Ulf Ulmsten Lecture - Curing Pelvic Floor Dis ...
IUGA Ulf Ulmsten Lecture - Curing Pelvic Floor Disorders in 2040: Measuring Sex and Others Aspects of Pelvic Floor Function
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In 2004, Ayuga established the Ulf Holmstein Lecture with the purpose of promoting innovation in urogynecology and encouraging innovative thought processes amongst our Ayuga members. We are pleased to welcome Dr. Rebecca Rogers, popularly known as Becky, as this year's Ulf Holmstein Lecturer. Dr. Rogers received her medical degree from Harvard University and pursued residency in obstetrics and gynecology and fellowship in female pelvic medicine and reconstructive surgery at the University of New Mexico, where she later established the Division of Urogynecology. In 2017, she moved to Austin, Texas, where she currently serves as the Director of Women's Health Institute and Associate Chair for Clinical Integration and Operations at Dell Medical School. As a physician, Dr. Rogers' early work focused on the measurement of sexual health in women with pelvic floor disorders. She developed and validated the first condition-specific measure for this important aspect of pelvic floor function. Prior to her work, sexual function was measured erratically and not always included as an outcome measure following therapeutic interventions. Refinement of this work continues today with the PISQ-IR, a sexual function measure that is validated in numerous languages across the globe, and this is sponsored by Ayuga. In her lecture, Curing Pelvic Floor Disorders in 2040, Measuring Sex and Other Aspects of Pelvic Floor Function, Dr. Rogers will discuss the definition of cure and describe pelvic floor and health outcomes that matter to patients and how we can refine our care focus to meet what matters to patients. Please give a warm welcome to Dr. Rebecca Rogers. Thank you. Thank you very much, Rene. This is such a tremendous honor for me. I'm so pleased to be here and share with you some thoughts that I've had over time regarding curing pelvic floor disorders. So first, I'd like to announce my disclosures. I receive royalties from UpToDate, and I receive travel and stipend from ABOG, ACOG, and Ayuga for various services I perform for the societies. So I thought we'd start with the definition of cure, and if you look at this, the first definition focuses on symptoms. It does not focus on anatomy. It focuses on symptoms and relief from a disease. The last one is a course or period of treatment, and I think sometimes as you're a gynecologist, we focus on that. If we are treating, therefore we are curing. I wonder sometimes if that is always true. So this is a picture of a patient of mine, probably similar to many of the patients you have treated, who came to my office and said, I want to be fixed. I want you to fix this problem. Now if you're a mentee of mine, you know that I detest the word fix. I don't like saying to my patients, I'm going to fix this or that, because frankly sometimes we see vaginas that kind of look like this car. Can this be fixed? Even if we could put it all together, we would end up with a rehabilitated car. We wouldn't end up with a new car. So I digress. Let's get back to my patient. She came. She said, I want you to fix me. I have this prolapse. It's really bothersome. I feel uncomfortable. I feel a bulge. And I said, I'm your gal. I can fix this. So this is a picture of her prolapse. Now back then we didn't measure anything. We had a prolapse that was small, medium and large. This was large. And no pop cue. And I said, okay, I know what to do. I'll do a native tissue repair, because that was the repair I knew how to do. And we thought we did a pretty good job, right? Everybody came in with a prolapse, got a native tissue repair. That's what we did. We felt comfortable with. And everybody was great. So here's me, a younger self, grinning because everything was simple. I had a patient who wanted to be fixed. I knew how to fix it. Everybody was going to do great. And then I got my education from my patients. So I'm still smiling, but maybe not grinning so foolishly. So let's look at a picture of a patient who I fixed. Does this look like it's been cured? Her prolapse has been cured? Yes or no? Yeah. What if I told you that she has intractable pain? She could never have sexual relations again. Would that be a cure? No. So it looks good, but works bad, right? How about this? This patient comes back. She's had a prolapse repair. Same patient. I'm doing her exam. And I'm sitting down looking at the prolapse. And I say, so how are you doing? She says, great. I'm doing great. I feel fabulous. You did such a great job. And I go, great. It looks wonderful. Who has done that? Looks bad, but works good. Right? Maybe we're missing something here. So early in my career, I would come to these meetings and listen to lectures. And one of the lectures that made a huge impact to me, I still remember it very clearly, was a lecture from Dr. Hilton. And he put up a chart like this and started talking about the comparison, a randomized trial, comparing BIRCWH to midurethral sling. Now midurethral sling had not gained the traction that we had thought it would at that time. There were naysayers. I was a naysayer. And this was a randomized trial. We didn't have a lot of randomized trials, almost none in any surgical field, let alone gynecology. So he had a randomized trial, and he started talking about his results. And here they were. Objective cure, 60%. What do you mean 60%? We tell our patients that we're going to do a midurethral sling, and our success rate, do we tell them 60%? How many people say 60%? I don't even say 60%. So this was a definition by Eurodynamics and Systemetrogram, and they couldn't leak. And only 60% made that. And if you looked at just the success rate for stress incontinence, it was 56%. And if you asked the patient, did you ever leak, it was 32% met that, said I never leak. And that last column, I remember the most vividly. The last column was a patient who had their surgery, didn't leak, and didn't have any problems from their surgery. Practically no one met those criteria. This really changed the way I thought about outcomes. He also talked about satisfaction. He said we asked our patients if they were satisfied with their surgery. And everybody said yes. But then they said, they asked them why they were satisfied. Well you told me that I might die, that you might put a hole in my bladder, that I might bleed to death, that I might have pain, that the mesh might go into my bladder, and none of those terrible things happened, so I'm really satisfied. I survived. I would like to say that that is a low bar for success or cure. So clinical care, I think, is a three-legged stool. We need to have good diagnosis, which involves measurement. We need to have good treatments, and we need to measure the outcomes. And we need to have good rulers, so that we can measure what is important and what matters to patients. So how do we measure function? We treat prolapse, urinary incontinence, and fecal incontinence, and we can use objective measures. As surgeons, we love that. That's easy. You know, how many people say, oh great, I have another overactive bladder patient in my clinic. I am so excited. Versus, oh, this lady has a bulge. So I can get my anatomy head on and treat that. So we like objective measures. We can measure patient bother, and we can look at the severity of the symptoms. So we have come a long way in measurement. And this was really the birth of patient-reported outcomes. When I started as a fellow, it was controversial to include these subjective outcomes. What do you mean? We need to prove that they don't have urodynamic stress incontinence. Now I would add that not only do we need to have patient-measured outcomes, but we need to make sure that those are the outcomes that really matter to patients. So why do we do patient-reported outcomes? Well, direct observation of the event might be challenging. For example, it might be challenging to see someone have an orgasm in your office. Maybe you wouldn't want that to happen either. Anal incontinence, hard to observe. If we can measure, then we can make comparisons. And we can see how we do. We can give ourselves a report card. And we can plan where to go. So now let me talk a little bit about my journey into sex. So I thought I included sex in the title because who doesn't like sex? Everybody likes sex. Sex sells, so I thought it would be good to include it in my title. So my journey in sex was I started doing repairs as a fellow. And we'd have a patient, such as you see on the left. And we would do this to them. And then we wouldn't ask them anything about their sex life. It just seemed amazing to me. What we would do, I want everybody to do this. What is this? This is two finger breasts. This is how I measured sexual function as a fellow. If you could put two fingers in, then sex was great. So a little anthro centric, I would venture to say most women in the room don't know how long, how wide their vagina is. We just don't do that. At least I don't do it. But we do have sex. And we do know what good sex is. And it has nothing to do with two finger breasts. So let's start talking, I started thinking and talking about what makes for good sex. And how would you measure it? It's really tough. Now one way to measure it is the absence of disaster. If you don't have pain, you have great sex. No. No. That is not great sex. And then I thought, well let's measure satisfaction. Everybody cares about satisfaction. Now remember, expectation is linked to satisfaction. So if your expectation is low, like our patients who survived their surgery, then our satisfaction might be high. And if our expectation is high, even if everything is great, our satisfaction might be low. So satisfaction turns out, I don't think is a good proxy for how we measure sex. That began my PISQ journey. It started with my thesis project as a fellow, and then grew to most recently the PISQ IR. And we have been working to try to be able to measure sexual function in our patients, because they really do care about that outcome. So now, I'm going to talk about the PISQ IR. Now, we have an alphabet soup of measures. Right? The PFDI, the PFIQ, the PISQ, a terrible sexual function questionnaire called the FSFI. No, I'm joking. Lots and lots of measures. But that was not the case. And this is the first step in the journey of figuring out what we really need to measure. Now, how many people give their patients questionnaires when they show up to their clinic? How many people look at every response? It's hard. You're busy, they're filling out forms, and do our patients like it? Do they like sitting there at, why are you asking me this question? I don't understand. So we need to make the next step. We have, I think, a communication gap. These are some examples from the recent literature. One of my former partners, Jenna Donovan, worked on this. And she asked patients what they thought were complications regarding their surgery. And one of the complications they reported was that if their sex life didn't improve, they ranked that as a severe complication. I wouldn't normally do that. And we know that goals for treatment don't always match what patients are presenting for. For example, there have been a number of goal research studies where patients write down their goals. They have prolapse, they are worried about bulge, but they really want their leakage to be addressed. So we aren't always talking the same language. How many of us have spent a long time, as this individual in this slide is, talking to our patients, you go to the pre-upholding area, the nurse asks the patient, so what is your doctor going to do today? And the patient says, I don't know. And you are like, we gave her a handout, we sent her to a website, she filled out these questionnaires, I've met with her twice. We need still to work on our communication and make it better. I would say we constantly go to what we like. I love anatomy, I love surgery, I love the surgery, I love to talk about it. And if you look at the number of abstracts at this meeting, we are talking a lot about anatomy. But maybe we need to spend more time talking about what matters to patients and reverse this percentage or at least make it a little bit more balanced so that we can assess what we do to anatomy. So what outcomes should we measure? Part of my work at the University of Texas is trying to figure this out. It's not an easy task and we have not figured it all out, but I think we have made some strides. We still have an alphabet soup of measures. We include global health measures, not just the ones that we have. We want to measure their pelvic floor dysfunction, but we know that patients with depression and anxiety often do not have good outcomes following our interventions. So it's linked. If we ignore all that and only invite the incontinence or the prolapse in, is that patient going to be healthier? Maybe not. We also include some condition specific measures. We ask patients about their goals. We ask them to tell us how they're doing periodically through electronic communication. And we have tried to integrate it into our workflow. We ask patients to complete it prior to the visit. They do not all do that. We review things before they come and we have case conferences where we discuss about standardized plans of care and look at goals to clarify other symptoms. And we also look at whether they're doing better prior to their visit. Did we make a difference? These are some of the goals and those of you who measure goals know that they can be very revealing. These goals have nothing to do with anatomy. They have everything to do with living your life. So here is some of what we're trying to work on to make it clearer so that I can have a visual input of how my patients are doing. Now this does not seem like a big step, but in my career this is the first time I know how my patients are doing as a whole out of a research study. So these patients are not, these are just clinic patients that are coming who responded to our PGII. So, thankfully, most of them in the blue are better. Some haven't changed yet and some are worse. So now I can start knowing where to start and where to look to change my interventions. We try to create patient dashboards with visuals so that they can see whether their symptoms have improved. Red means they came with a symptom. Green means it's improved. So it's just, again, putting our toe in the water trying to figure out how to integrate our clumsy tools into our workflow. Our faculty receive evaluations that are based on how their patients say they're doing. Again, blue says they're doing better. Gray, not so much change. And then we have some patients are doing worse. This is very powerful to know actually how you're doing. There are lots of challenges. Our EMR, our electronic medical record, they're all clunky. We need to have patient reported outcomes that truly matter to patients integrated into our electronic records as we do lab values. Translation lags behind. So I put this picture of a car. Who knows what kind of car this is? Somebody probably over 50 or 60. It's a Nova. And it was marketed in Mexico as a Nova. That's a problem because that means doesn't go in Spanish. So it's not a good marketing technique. So we need to figure out this and particularly for an international society like IUGA, we need to figure this out. And are these measures really what is important to patients? They're better than nothing, but they still have a long way to go. We need better tools. Our tools are clunky. We need to individualize them somehow. And we need the filling out of these tools to bring value to our patients. Why should they fill them out? Should they fill these out so that our fellows can meet their thesis requirement? Now our fellows might say yes, but patients maybe if they fill them out and they're doing well, they can remain in the embrace of care, but they don't have to come and see us. That would bring value. I've had the opportunity to work with Elizabeth Teasburg who wrote with Michael Porter, value based care. And talking about how we have to change pain and calm, how we deliver that care in a way that patients can get on with living their lives without bother from their treatment. How many patients' lives have we irrevocably altered because we told them that they could not pick up a gallon of milk after their prolapse surgery? How crazy is that? Are we doing their surgery so that the milk is protected? No. We want them to live their lives. This shows a pictogram of experienced groups. We brought together patients who were undergoing treatment for a variety of disorders. And we asked them what they're interested in. They wanted information, they wanted to feel at ease in their care, and they wanted to be in good health. Again, I don't know how to measure all this, but I think that this is going to contain some answers in the future. We have a ways to go. This is a relatively recent review of 140 articles. And we are still focusing primarily on anatomy. We like it. It's what we do. We are surgeons. But as we were talking yesterday, we need to start looking from different perspectives. Only 30% included subjective measures at all. 23% included a composite definition. And only a few put it all together. Now what happens when you do that, when you put objective, subjective, complications, and then whether the patient's feeling well, your success rates go down. Because you're measuring it differently. But I think it is the truth. And we need to start telling the truth. How do we get there? We need better electronic health records. We need better integration. We need to link these patient-reported outcomes to our interventions. We need to create meaningful decision aids for patients that are condition and person-specific. And we can do this. Yesterday, we heard a fabulous speech by Rane and Jeff about patient-centered intervention. The only way that this can happen is to measure patient-centered outcomes. We all know that the future looks bright. There are more and more women who are going to need our services. The baby boomers are moving up. This is a common problem. So that's great. We have lots of business. What we need to do is figure out our future so that the future is bright for our patients. Thank you.
Video Summary
In the video, Dr. Rebecca Rogers gives the Ulf Holmstein Lecture on promoting innovation in urogynecology and encouraging innovative thought processes. She discusses the importance of measuring sexual health in women with pelvic floor disorders, as well as the need for patient-centered outcomes in the field. Dr. Rogers shares her own experiences with treating patients and emphasizes the importance of defining and measuring "cure" in pelvic floor disorders, focusing on symptom relief and patient satisfaction rather than just anatomical changes. She also discusses the development of the PISQ-IR, a sexual function measure sponsored by Ayuga, and the challenges and opportunities in integrating patient-reported outcomes into clinical practice. Dr. Rogers concludes by stressing the need for better electronic health records, meaningful decision aids for patients, and more patient-centered interventions in the future of urogynecology.
Asset Caption
Rebecca Rogers, MD
Keywords
innovation in urogynecology
sexual health measurement
patient-centered outcomes
pelvic floor disorders
patient-reported outcomes
electronic health records
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