Adult Neurogenic Lower Urinary Tract Dysfunction - David Ginsberg

April 30, 2022

Diane Newman and David Ginsberg discuss the key recommendations of the AUA/SUFU guidelines on adult neurogenic lower urinary tract dysfunction, diagnosis, and evaluation. Dr. Ginsberg gives a deep background on neurogenic bladder and some of the challenges that tend to arise when treating these patients. They also discuss the quality of life for patients who are living with adult neurogenic lower urinary tract dysfunction.


David Ginsberg, MD, Professor of Clinical Urology, Keck School of Medicine at UCS, Chief of Urology, Rancho Los Amigo National Rehabilitation Center, and Chair of the AUA Neurogenic Lower Urinary Tract Dysfunction Guidelines Channel, Los Angeles, CA

Diane K. Newman, DNP FAAN BCB-PMDUrologic Nurse Practitioner, Adjunct Professor of Urology in Surgery Research Investigator Senior, Perelman School of Medicine, University of Pennsylvania

Read the Full Video Transcript

Diane Newman: Welcome to UroToday's Bladder Health Center of Excellence. I'm Diane Newman. I am a Nurse Practitioner at the University of Pennsylvania in the Division of Urology. And I'm the Center's editor. And here with me today, is Dr. David Ginsberg, Professor of Clinical Urology at the Keck School of Medicine of USC, Chief of Urology at Rancho Los Amigos National Rehabilitation Center, and he is also the Chair of the AUA Neurogenic Lower Urinary Tract Dysfunction Guidelines Panel.

At the AUA annual meeting, Dr. Ginsberg presented a summary of the key recommendations of the AUA/SUFU guidelines on adult neurogenic lower urinary tract dysfunction, diagnosis, and evaluation. I found it very informative and felt it would be a great addition to the Bladder Health Center. So thank you very much for being here today, Dr. Ginsberg.

David Ginsberg: Well, thanks, Diane. I want to say a big thank you to you and everyone at UroToday for allowing me to give a little presentation. This is very similar to what I did at the American Urology Association annual meeting, where this guideline was initially presented. And when I started off, I thanked some folks, so I'm going to do it on this presentation as well. The first thank you was to my vice-chair, Steve Kraus, and to all the panel members. Because this is a huge undertaking, and these guidelines cannot be done without the help from the entire panel on the guideline. And I also give a big thanks to the folks at the AUA, Leila, and Lesley, who really helped us get all the information and put it together. And my final thank you was actually to all of the folks that participated in the peer review, as there is no doubt that their comments made this a stronger and better document for all.

So first, let's start off with some definitions. This guideline is for neurogenic lower urinary tract dysfunction, and that is essentially what we would call a "neurogenic bladder". But I want you all to appreciate what that means. It means the abnormal function of the bladder, but also potentially of the bladder neck and the urinary sphincters. And it's related to a neurologic condition, whether it's suprapontine conditions, such as a stroke, or brain tumor, or Parkinson's, a suprasacral spinal cord lesion, such as a spinal cord injury, multiple sclerosis, or transverse myelitis, or a more distal lesion, such as something you may see with an abdominal perineal resection, radical pelvic surgery, or a diabetic.

So I think we have some challenges. And one of the challenges, this was one guideline for a variety of issues, such as different neurologic conditions. So someone who has stable disease, something like a spinal cord injury, something that may be progressive, like multiple sclerosis, different levels of cognition, different levels of hand function, and different symptoms. Because patients with neurogenic issues can have both inability to empty their bladder, inability to store, or possibly both.

We can have issues such as urinary tract infections and dysreflexia. But I also want to point out this does not include pediatric neurogenic lower urinary tract dysfunction. We also did not cover issues like erectile dysfunction, and fertility, and bowel management. All of these are actually a normal part of my office day when taking care of many patients with neurogenic lower urinary tract dysfunction.

Some, examples of our literature search, and how we got to the articles that we use.

If you look at the whole guideline, it is one of the bigger ones on the list of the American Urology Association guidelines, over a hundred pages long with 60 guideline statements. And that's a large number of guideline statements. And the statements were placed into different sections. And what I'm going to focus on today is the initial evaluation, dysreflexia, surveillance, and urinary tract infections.

This is our first guideline statement, and I think it's appropriately stated as number one because it is a very important one. And this says, at initial evaluation, clinicians should identify patients as either low-risk or unknown risk. And if they are an unknown risk, they need further stratification.  So this raises the question. So we are going to kind of give you some clinical vignettes as we go through this. What is the initial evaluation in a 65-year-old with neurogenic lower urinary tract dysfunction symptoms and a prior CVA?

So we're going to go through this chart, this algorithm. If you look at the initial evaluation here, it's a history and a PVR, and maybe you do a diary or a pad test. One of our statements says, at that initial evaluation in patients with low-risk, you should not routinely obtain upper tract imaging, renal function assessment, or urodynamics.  So who is low-risk? So low-risk are going to be patients that are spontaneously voiding. They're going to have a low PVR, and that usually includes suprapontine lesions, such as I mentioned before, stroke, brain tumor, brain injury, Parkinson's. It's usually going to be voiding, usually going to be that they are emptying their bladder fine. But I want you to also appreciate that some of these patients may evolve. For example, we may see patients with cerebral palsy that can evolve to have issues with incomplete emptiness. So just because you start in low-risk where you might be in that category that is often in low-risk, it does not mean that you are always going to be in that low-risk category.

So the reason we're not getting those studies is that these patients have minimal risk for upper tract damage. And because of that, we do not need urodynamics to identify potential risks for upper tract damage, we are going to treat their symptoms empirically.  Now you can get urodynamics in these patients, but you would use it more when you're having trouble treating them with empiric therapy and to help you guide subsequent therapy.

So here's that initial statement. So if you are not low-risk, you are an unknown risk, so we got to further delineate that. So it raises the next question. What is the initial evaluation in a 24-year-old with T4 spinal cord injury, who manages the lower urinary tract with oxybutynin and clean intermittent catheterization? And when should that initial evaluation be done?  So now, let's move over to that flow chart. So this patient is not low-risk, this patient is now an unknown risk. Okay? And who is an unknown risk? That is usually a suprasacral spinal cord injury, multiple sclerosis, transverse myelitis, or maybe someone with something such as spina bifida.

Now with that evaluation, they may end up being in the low-risk category, but often, these patients are going to be either in the moderate or the high-risk. And why this is important is, it helps guide future surveillance of these patients. One of our primary goals as urologists is to make sure that their renal function is optimized and maintained throughout their life.

So, what statements do we have about this? So the first statement, in the patient with the acute neurologic event resulting in neurogenic lower urinary tract dysfunction, the clinician should perform risk stratification once the neurologic condition has stabilized.  Another statement was, in these patients, we want to get upper tract imaging off of the renal ultrasound, a renal function assessment, often serum creatinine, and urodynamics. And an important distinction is these patients should not have cystoscopy performed as the initial evaluation if they have neurogenic lower urinary tract dysfunction.

So let's say you are doing the urodynamics, and the patient has symptoms of dysreflexia. I want to talk a little bit about dysreflexia on the guideline statements that are related to that.  So one statement is that when you are doing urodynamic testing, or a cystoscopic procedure, or maybe doing something such as botulinum toxin, clinicians must hemodynamically monitor patients at risk for dysreflexia. So who's at risk? Patients with spinal cord lesions at T6 or higher. And if you develop dysreflexia during these studies, you should terminate the study, immediately drain the bladder, and continue hemodynamic monitoring. And if you continue to have dysreflexia following bladder drainage, clinicians should initiate pharmacologic management, and/or escalate care.

So how do we define dysreflexia? Well, from a blood pressure point of view, it's a systolic greater than 150, or 20-millimeter mercury above baseline rise. The reality is, patients will tell you. They'll tell you they have facial flushing, sweating, headaches. I always ask patients if they have dysreflexia. Sometimes patients will say no, but then if you ask them, "Do you get headaches?", or, "Do you get hot and sweaty when your bladder gets full?", they say, "Oh yeah, all the time." They don't actually know what the term dysreflexia means. So you should always ask it in that manner.

If they do not get better once you've drained the bladder, the recommendation is to use topical nitroglycerin paste. And the reason we do this, especially in the higher-level spinal cord injuries, is they already can have fairly low blood pressure at baseline. And this way, when their blood pressure normalizes, you can wipe the nitro paste off. Then we don't bottom [inaudible 00:09:30] off the blood pressure. If you don't have the nitro paste, another option would be something such as sublingual nifedipine.

Let's move over to surveillance. Okay? Because now, theoretically, we have our patients in their different categories. So think of a couple of different scenarios. So what's the appropriate surveillance in a 65-year-old with NLUTD symptoms and a prior CVA? In a 24-year-old with T4 spinal cord injury who manages his bladder with oxybutynin, and CIC.

So, to understand how you surveil patients, you have to have a better understanding of what places patients in low, moderate, and high-risk. So I told you the studies to do, but I didn't tell you now, what results put them in either a moderate or high-risk. And you need to know that. So this table summarizes it. So, if you are low-risk, PVR is low. Patients who are moderate or high are often elevated or may have an indwelling catheter. Upper tract imaging and urodynamics are normal, if they're even done in a low-risk patient, they don't have to be done. Patients with DO tend to have, in moderate risk tend to have detrusor overactivity. Patients with high risk may have poor compliance reflux or abnormal findings on their renal ultrasound.

So again, we will go through some guideline statements regarding surveillance and the risk levels. So if you have low-risk NLUTD stable urinary signs and symptoms, the clinician should not obtain surveillance upper tract imaging, renal function assessment, or multichannel urodynamics. And again, who's at high risk? Patients that are spontaneously voiding, have no indwelling catheter and do not require clean intermittent catheterization.  And it's also important to remember that things can change. So if you have low-risk NLUTD, and you have new-onset signs and symptoms, or new complications, such as dysreflexia, or infections, or stones, and/or upper tract renal deterioration, then the clinician should reevaluate and repeat risk stratification as we discussed earlier.

So moderate risk, so who is at moderate risk? Patients with urinary retention, bladder outlet obstruction, detrusor overactivity, the PVR is elevated, but they have normal renal ultrasounds, stable, and normal renal function. And those patients should be assessed with a focus history exam and symptom assessment, as well as a renal function assessment yearly, and upper tract imaging every one to two years.

What about the high-risk patients? So who are the high-risk patients? They tend to have a loss of bladder compliance, potentially a more concerning finding urodynamic. They may have reflux. They may have normal upper tract imaging. They may have abnormal renal function. And these patients should be assessed yearly, with a focused history exam, symptom assessment, renal function assessment, and upper tract imaging. And in addition, urodynamics can be repeated when clinically indicated.

Now, what about surveillance in regard to urodynamics and cystoscopy? So in patients with moderate or high-risk NLUTD who experience a change in signs and symptoms, new complications, or upper tract renal function deterioration, clinicians may perform multichannel urodynamics. However, we should never really be performing a screening or a surveillance cystoscopy in NLUTD patients without the appropriate indication.  So that raises a question. Here is another clinical question. How do you perform surveillance on a 35-year-old man with a C4 spinal cord injury and an indwelling catheter with a suprapubic catheter?

So what do our statements say regarding this? So, in NLUTD patients with a chronic indwelling catheter, clinicians should not perform a screening surveillance cystoscopy.  Now we know that patients with a spinal cord injury do have a higher risk of bladder cancer, but it's only 0.3% higher than in the general population. Even, if they manage their bladder with an indwelling catheter.  We also know that these patients may present at a younger age, with more advanced disease, with more unfavorable pathology, and a greater percentage of squamous cells. But the reality is, screening and cytology are poor screening tests. You're more likely to find inflammatory lesions, leading to unnecessary biopsies, and risks related to that. And the reality is, the best screening tool is history. And that history is, that you are looking towards gross hematuria. If the patient has gross hematuria, this would absolutely be an indication to perform a cystoscopy.

In NLUTD patients with an indwelling catheter, clinicians should perform an interval physical examination of the catheter and the catheter site. Now, as an aside, I am not talking about management in today's discussion, but we do recommend that if patients are able to, we would recommend intermittent catheterization over an indwelling catheter. And for patients that have indwelling catheters, we would recommend a suprapubic, over a urethral catheter.  And in, NLUTD patients with indwelling catheters who are at risk for upper and lower urinary tract calculi, so that includes patients with spinal cord injury, recurrent UTI, immobilization, and hypercalciuria, upper tract imaging should be performed every one to two years.

I'd like to finish it up by talking about urinary tract infections. So three questions, three different scenarios. How often should one obtain screening, urine testing with UA, and culture in a 45-year-old woman with MS that manages her bladder with CIC? When should asymptomatic bacteria be treated in a 32-year-old man with a T4 spinal cord injury? And when should antibiotic prophylaxis be considered for patients with NLUTD? So the answer to the first question is never because we are not going to treat asymptomatic bacteruria.  Which then, answers the second question. When should you treat asymptomatic bacteruria? And the answer to that is never unless the patient is pregnant, or there's a planned urologic procedure in which urothelial disruption or upper tract manipulation is anticipated.

And the answer to the last question is, it depends. What does it depend on? It depends on the scenario. So, some more guideline statements for us. In NLUTD patients who manage their bladder with an indwelling catheter, clinicians should not use daily antibiotic prophylaxis to prevent urinary tract infection.  And in NLUTD patients who manage their bladders with CIC, and do not have recurrent urinary tract infections, clinicians should not, again, should not use daily antibiotic prophylaxis.  However, a little bit different, in NLUTD patients who perform CIC with recurrent UTIs, clinicians may offer oral antimicrobial prophylaxis to reduce the rate of UTIs following shared decision-making and discussion regarding the increased risk of antibiotic resistance.

So, first off, going back to this guideline statement. There is no definition of recurrent UTI specifically for the NLUTD patient population. A significant part of the evidence for this guideline statement came from the AnTIC study, which was one of several studies that showed that there are fewer UTIs with antibiotic prophylaxis. And this study looked at patients on clean intermittent catheterization, though all of these patients that were on clean intermittent catheterization did not have neurogenic bladder dysfunction. There was almost a 50% reduction in UTI incidents.  Now the trade-off is that there was also greater resistance to the antibiotic used, and hence, and it's important, that this decision is made with the patient in a shared decision-making manner.

And I think, my last guideline statement that I want to go over today is that in NLUTD patients with a suspected UTI and an indwelling catheter, clinicians should obtain the urine culture specimen after changing the catheter, and after allowing for urine accumulation while plugging the catheter. And urine should not be obtained from the extension tubing or the collection bag.

So, I did not cover non-surgical treatment, surgical treatments, follow-up, and future directions. I would certainly recommend that you review these guidelines. They are on the AUA website, and they cover all of these sections.

And I think I will finish it up with a picture. This is at my institution, at Rancho Los Amigos National Rehabilitation Center. And this is a picture from, we have a yearly spinal cord injury games, and this is one of the basketball games.

So again, I thank you to all who helped make this happen. This was truly a team effort, and I hope you all enjoyed this today. Thank you.

Diane Newman: Thank you so much, Dr. Ginsberg. When I look through this document, which I think is excellent, something really needed for clinical practice, a lot of clinical principles and expert opinion. Right? The levels of evidence, we don't really have in this population, do we?

David Ginsberg: Well, it depends on what we're talking about. Certainly, there are certain sections where we have a really high degree of level of evidence for example, with botulinum toxin. We have some nice evidence with some of the medications, and some with clinical principles, so it was a combination. And I think that's no different than a lot of the guidelines that we have.

Diane Newman: And the other thing I was kind of surprised by is, we see patients over a long time. There's no question that patients with spinal cord injury and neurogenic bladders are living longer, but they are lost to follow-up. I worry because you see these complications, but the recommendation was not to say, do yearly cystoscopies on them. But also, should we only be seeing them when we see a problem? Is that what should happen in clinical practice?

David Ginsberg: Right.

Diane Newman: What are you doing about this?

David Ginsberg: Well, you're talking about two different things. The patients that are lost to follow-up, we can't do anything for, unfortunately. And I think that we're lucky, at least where I am, at Rancho Los Amigos, because we have, it's a dedicated rehab hospital. So we have patients that are dedicated to our hospital, and we see them on a regular basis because this is one of the hubs of their life. And it's fantastic. And this is a unique place, where not only do they get their care, but their social events, and places to do exercise, and art classes, or whatever it may be. But again, that's unique. Right? Most providers aren't in that kind of scenario. So I think it really behooves us to have a very significant, important conversation with our patients initially, talking about the risk of upper tract damage. This is especially going to be an issue for those patients that are at moderate or high-risk.

The patient with a stroke, they're not going to have upper tract damage, it's more of just managing their symptoms. So, I don't worry about their getting in trouble with hydronephrosis, or loss of renal function, whatever it may be. When you talk about our spinal cord injury patients, or our spina bifida patients, or transverse myelitis, or whatever it may be, they are certainly at risk for upper tract damage. These are patients that every year, should the very least, be getting a history, a physical, an exam, and a renal function test, at the very least, every two years or every one year, depending upon where they are in that risk stratification. Getting an ultrasound every year. A cystoscopy is not going to change any of that evaluation. A cystoscopy is really done to evaluate for concerns with bladder cancer, especially those with indwelling catheters, and the evidence just doesn't really support it, and there is actually pretty good evidence. You talk about levels of evidence, here are some pretty good levels of evidence to support not doing a regular cystoscopy, because we're not adding anything. But absolutely doing a cystoscopy if the patient has hematuria.

Diane Newman: And you brought up the point too, about prophylactic antibiotics in this population, and the fact that we don't really have a good definition for recurrent UTIs. Right? And what I see a lot in practice, is that every time in the neurogenic population is, when they change catheters, whether it be suprapubic or indwelling, they give them a dose of antibiotics. But that's not something that is really based on evidence, is it? That's not really something that we should be doing.

David Ginsberg: No. I don't. I think that's one of our, it may even be an AUA recommendation. But I don't. I tend to do it if patients get recurrent UTIs, and for those that don't have recurrent UTIs, I don't do it. I do think it's one of those things that is definitely helpful for those patients that have recurrent urinary tract infections. But, that's certainly an issue with these patients. But the other challenge, I thought you were going to go with the question, Diane, is a lot of these patients don't have the sensation they had before their neurologic event. So they're not going to tell you, "I have burning with urination, and dysuria, and frequency." And sometimes the symptoms are extraordinarily vague. I have a headache, I am more fatigued, I have more spasticity, I have dysreflexia. So is that from a UTI? Is it from constipation? Is that from a pressure ulcer, is bleeding an issue? So there are a lot of things.

Diane Newman: Mm-hmm (affirmative).

David Ginsberg: And then you get the patient who goes on with some of these vague complaints and they have an indwelling catheter. So then, the ER doc will get a urine culture, and the urine culture is always going to be positive because they do catheterization.

Diane Newman: Mm-hmm (affirmative).

David Ginsberg: So is that truly a UTI? Is that just colonization because you have a catheter? So I think it's really on us to educate our patients that a positive bacterium in the urine, does not necessarily equal a urinary tract infection that requires treatment.

Diane Newman: Well then, what are you doing in practice then? Because you're bringing up some really good points. So does the patient call in and say, "I think I have one." And you culture them? Or-

David Ginsberg: That was one of the other things we recommend. I think it's on our guideline, I think it's in the EAU guideline, I think it's in the CUA guideline. I think I would say all these patients would always get, would recommend getting a culture because the symptoms are not so specific. My preference is to always get a culture. Sometimes you can't do that, depending on the patient's mobility, and their social situation. My preference is to always get a culture. Depending upon the symptoms and how they're doing, we may choose to wait and see what the culture shows, versus starting an antibiotic immediately once the culture's been dropped off. And you tend to get a better sense of that, as you know, as you have more of a relationship with your patient, in terms of these are definitely new symptoms, versus, you're having fatigue all the time, this may be something more than just this positive culture that's there every month, that you keep going to the urgent care for. Maybe we should look for something else.

Diane Newman: Now, what percentage of your practice then, is in the rehabilitation population then?

David Ginsberg: So I'm there twice a week. I kind of have two practices within the world of female public medicine.  And then I get to really focus on the neurogenic bladder two days a week at Rancho Los Amigos. And the other three days a week, I get to be at Keck at USC, on the private side, where it's more of the standard, and I still see a fair amount of neurogenics, but then there is prolapse, and incontinence, and overactive bladder, and lots. So yeah.

Diane Newman: They are getting more complicated, aren't they, because they're living longer. I mean our care and technology are such advancings that they have a better quality of life, and we see that they live with this disability. And I just think it's getting to be more and more complex, but I don't see a lot of really good education out there on how to care for these patients. And they see it as a challenge.

David Ginsberg: No, it's a challenge. You're right. I think some of the other bigger challenges are when we get adult spina bifida patients that have some cognitive issues and are being cared for by their parents still. Now their parents are in their 70s. And then, we have to have these challenging conversations of, who's going to help care for? Who's going to do the catheterization or catheter changes, whatever it may be, for your son or daughter, when you're not able to do that? I think as a parent, it's probably the last thing that you want to face. But as a parent, you want to make sure your child is taken care of. And it's always, that's one of those challenging situations that there is never, often never a good answer for. But we need to find an option.

Diane Newman: Yeah. Well, thank you so much. I always love listening to you, and I think that this is a really important topic. Because, I have to tell you, the emails I get through UroToday, I have one right now on a patient with spina bifida. He's now in his 30s, he's lived with it for his whole life, he's married and has children. And he emails me about the fact that he's having recurrent urinary tract infections.

David Ginsberg: Yeah.

Diane Newman: It's unbelievable now what, with the internet, that you have so many people searching, and in this population. And so it's kind of nice to have someone like you to give us some of that information, and to have this guideline. I think it's really helpful. So thanks so much.

David Ginsberg: My pleasure.

Diane Newman: All right.

David Ginsberg: Thank you for having me, Diane.

Diane Newman: Nice. Thank you.