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MedPage Today "News-Based CME" has been reviewed and is acceptable for up to 2098 Elective credits by the American Academy of Family Physicians. AAFP accreditation begins January 1, 2012. Term of approval is for one year from this date. Each article is approved for 0.50 Elective credits. Credit may be claimed for one year from the date of each article.MS and Quality of Life, a Clinical Context Report
Transcript:
JOHN GEVER: I'm John Gever with MedPage Today. I'm here to do a Clinical Context interview with Dr. Jack Burks, who is the Chief Medical Officer of the Multiple Sclerosis Association of America and a practicing neurologist, and we are here in Amsterdam at the ECTRIMS/ACTRIMS Annual Meeting, where we're hearing a lot of new research about multiple sclerosis.
What happens when a patient with MS sees the doctor is, very frequently, you know, the doctor has a treatment algorithm -- you do this, this, and this for a patient with multiple sclerosis, and okay, we're done, get out of here -- and I'm sure that's not satisfying to the patient and is really not treating what the patient needs.
What do clinicians need to know about the patient experience with MS? I mean what are some of the things that they may not be getting from their neurologist or from their family physician?
JACK BURKS, MD: Well, I think the important part is we now have treatments for multiple sclerosis which we didn't have 20 years ago and so there's a lot of excitement. There are new drugs being developed every year, there are oral medicines coming, there are very powerful medicines coming, and it's an exciting time. And therefore the focus is really on how can we stop your MS, which is an appropriate focus, and we're making great progress.
What gets second-line consideration -- I'll call it that way, I'll be nice -- is the quality-of-life issues. Now, what happens to the patients' other problems, their bladder problems, their bowel problems, their sexual dysfunction, their thinking problems, their being tired all the time? Because the conversation is focused at what's the best medication for you, which is a very important conversation.
But we don't spend as much time, I think, with the other issues that are very important to the patients, because if we have a treatment for MS, a disease-modifying therapy, you may not see any difference for years. But if you have a treatment for the bladder, for example, that can work in two days and they've had this problem for 15 years, that's also -- that's an important issue that we also need to discuss. I think that we don't spend as much time talking about it, and the patients tend not to bring it up either. So part of it is my fault, maybe, because I don't delve into it.
And the other part is the patients don't say much about it and it's sort of like don't ask, don't tell. If they don't ask, you know, I tend not to talk about that as a neurologist. And we need to change that because we have a number of new treatment modalities for these symptomatic managements that help quality of life, frankly, and that is also very exciting to me.
GEVER: And, I guess, how does the clinician get this conversation going? I mean, should the clinician have a checklist of symptoms? You know, "Are you having bladder problems, are you having bowel problems, are you having trouble swallowing?"
BURKS: Well, almost all physicians who take care of MS patients have a checklist. And we ask the patients to fill out a form, and they check everything, because MS affects so many different things. But we really spend our time focusing on the disease-modifying therapies, and we don't really go into much depth, because they literally may have 10 or 15 issues. So we sort of leave it up to the patient to say what things are really bothering you. And then the patients get so focused on disease-modifying therapies, too, then they don't want to mention it. Or they say, "Well, you know, it's just part of having MS and I'll live with it," not realizing there are actually treatments that could be very helpful for them.
And so the way to change that, I think, is to make patients more aware that there are ways to treat these other issues and have physicians knowledgeable enough to know what those methods of treatment are and address them. And that's true for the primary care doc as well as the neurologist, because a lot of these patients spend a lot more time in a primary care doctor's office than they do at a neurologist's office.
GEVER: And I guess we'll start with neurologists anyway. Are they generally aware of the treatments for some of these other non-disease -- not the symptoms that are modified by disease-modifying therapies -- the other symptoms? Do clinicians know about treating the bladder issues and the cognitive deficits and so forth?
BURKS: Yes, I think they do. They just don't talk about them very much. I mean if you gave doctors a quiz, they would say, "Oh, yes, you can treat the bladder by such and such, and the bowels, you can try to relieve constipation. And, you know, if they have sexual dysfunction for men, you can try Viagra. For women, if they're dry, you'll use lubricants. I think that's general knowledge; it just doesn't get discussed much.
GEVER: So, these aren't really anything special for MS patients. If any patient coming in complaining of a bladder issue, you would use it -- basically go through the same sorts of treatments with them?
BURKS: If we had the discussion, yes, and especially true with the bladder issues, since you brought that up first, because there are treatments that can really stop incontinence, and incontinence is a huge issue for patients. And we've had treatments for many, many years, anticholinergic treatments, but they have side effects. The patients get tired of the side effects, and they don't think they were really that great. And now the FDA has approved botulinum toxin for the treatment of incontinence, which is a shot, a bladder shot. You have catheterization; takes only a few minutes, but it will last, you know, eight to twelve months. So that's a big deal for the patients. So why don't the patients talk to the doctors about that? Because they have other things on their mind and they think, "Well, I'll just have to live with it. It's a burden of having multiple sclerosis and I'm not going to bother anybody else about it," or "I'm embarrassed to talk about it."
But it's interesting. I had a conversation with a patient the other day and I was asking her. She had primary-progressive MS and so she had a lot of symptoms. And so I was asking her, "What's bothering you?" and she went through about 10 different things. And then I just said, "Well, what about your bladder?" And she said, "Doctor, I don't want to go there. This is such a terrible problem for me. I don't even want to discuss it with you." So that gives you some idea of how people look at it.
And so now that we're aware of more treatments, better treatments, we need to bring it to the front with the patients and say, "Let's talk about this."
GEVER: Yes.
BURKS: "Maybe we can help you with this." And the patients need to know about it, too, so they can ask the doctor about it. Because if a patient comes to me and asks me about their bladder problems, you know, I'll take the time to talk to them. But if they don't mention it and I've got 14 things on my list of problems that they have that I'm dealing with, it may not come up, or it may come up very superficially.
GEVER: Yes. And while we're talking about bladder, the nonpharmacologic interventions -- I know that pelvic floor exercises are not, you know, there's some controversy about how effective they really are. But I wonder, in an MS patient, might they be even less likely to be effective because of the motor issues that come with MS?
BURKS: Not that they shouldn't be tried, but they're not so effective. The problem with the bladder in multiple sclerosis is neurogenic, and that means the innervation to the bladder wall and the sphincter of the bladder are disrupted because of demyelination in the spinal cord and above. So, therefore, it's not so much a mechanical issue, it's a more of a neurologic issue. But that doesn't mean you can't work with the mechanical issues as well, because most people with incontinence don't have neurologic problems that have been diagnosed. I would say 90% of the people with urinary incontinence are not multiple sclerosis patients.
GEVER: Yes.
BURKS: But if you look at MS patients, 80% of them have that problem and we're just not discussing it very much.
GEVER: Yes. And you mentioned the botulinum toxin and anticholinergics. Are there other medications, classes of medication that one can --
BURKS: There are. There are some alpha-blockers. Depending on that -- there are problems with failure to store in the bladder and failure to empty in the bladder. What I'm talking about is failure to store. They have to go to the bathroom a lot; they can't store the urine. But then there's another factor that in some patients -- and not all patients, of course -- is failure to empty. They have these big, flaccid bladders and they have to do intermittent catheterization to empty the bladder or they'll get infections from the urine that collects there.
So it is different ways of looking at it, and one of the big issues is there's what we call dyssynergia. So you have the bladder wall, and then you have the external sphincter, and the bladder wall contracts, external sphincter relaxes, and people urinate. Well, in MS, the bladder wall contracts at the same time the sphincter contracts, so where does the urine go? It goes up into the ureters towards the kidneys; you get reflux, which can be a serious problem. So not only are you talking about bladder problems, you might have kidney problems as well, so dyssynergia is another issue that we deal with very differently.
GEVER: And I would assume bowel problems would go along with this as well. And is it a constipation issue or an incontinence issue, or both?
BURKS: Mostly constipation, sometimes diarrhea, and we have to be careful. Like if I treat a patient with bladder problems, which most people have, with an anticholinergic drug, their side effects include constipation; dry eyes, dry mouth, and constipation and fuzzy thinking. So, therefore, you have to be very careful, because people with bladder problems don't want to drink. If they don't drink, they don't have to go to the bathroom so much. So if you don't drink and you're on anticholinergic drugs, your constipation becomes a huge issue.
So you really have to institute a bowel program very early in MS, and good bowel hygiene can minimize the discomfort and increase the quality of life dramatically in people who are having constipation.
GEVER: And does this include medications, and are we talking about your basic over-the-counter type of laxatives? Is that what you would recommend or --
BURKS: No, I don't like laxatives, but stool softeners might be used, but fiber, bulk-forming agents. There's typical ways we treat constipation and anyone else, and they're not prescription drugs, for the most part. And laxatives, people get accustomed to laxatives, and then they don't work so well, and so I try to stay away from laxatives unless I have to.
GEVER: And so I guess while we're looking at that part of the body, there's sexual dysfunction as well. You know --
BURKS: Well, we don't talk about that. It's amazing; people don't talk about it. Men will talk about it because they have Viagra.
GEVER: Yes.
BURKS: They have the erectile dysfunction medications. I won't talk about the specifics, because they all work and that's helpful to them. But it's amazing, most women have sexual dysfunction, too, but we don't hear about that so much. They have pain on intercourse. They have dryness. They have -- less likely to have an orgasm. All these things can be helped if we just talk to the patients about it. There are ways to deal with this, like lubrication. I mean the simplest thing in the world is an over-the-counter lubricant that can reduce the friction, can reduce the pain.
But there are a variety of ways to deal with it. Some people get muscle spasms when they have sexual intercourse and their legs tighten up. Well, there are treatments for muscle spasms that we can use. We can treat the pain directly, at times, so there's a lot of things to it, but we don't get to use any of those in many patients because we don't talk about them.
GEVER: Yes. And are there other unique things about sexual dysfunction in MS where a treatment that you might recommend for another type of patient that you would not expect to work in an MS patient?
BURKS: No. I think the lubrication, the erectile dysfunction drugs, the talking about it, you know, and there's a psychological part of sexual dysfunction that is huge. So we don't want to just focus on the physical side, but also the mental side. And so it's amazing how well we can deal with sexual dysfunction if we talk about it.
GEVER: Yes. And I understand swallowing issues are a factor in MS as well, and honestly I don't know anything about that. Tell me about it.
BURKS: They can be, they can. That's a really good question, John. The swallowing is especially important, because if you don't swallow properly you might get aspiration pneumonia. And so therefore it's really important to talk about "Do you have swallowing problems?" "Well, no, I don't have swallowing problems." "Well, do you cough when you take a glass of water?" "Oh, yeah, I do that all the time." You know, so you have to bring it out. And then you can do testing on the swallowing, and then the rehabilitation therapist actually can work with the swallowing. The speech language pathologists actually do a lot of work with swallowing as well, teaching them how to eat properly, where to put the neck. I won't go into the details, but the key is that speech language pathologists are very good at helping people with swallowing problems, and swallowing problems that lead to pneumonia are a serious issue.
GEVER: Okay. And so what else, what else might the MS patient experience that they don't talk about enough with their doctor?
BURKS: I would think cognitive dysfunction; that's another thing that we don't talk about very much. That's because MS patients are not like Alzheimer's patients. You know, if you talk to an Alzheimer's patient for five minutes, you know they have cognitive impairment; MS patients, no. They look good, they talk good. They make sense. But 50% of them have a cognitive problem, and the cognitive problems are many, but they're hard to pick up sometimes. Like, they have problems with executive function. When they start something, when they stop something, they have trouble understanding the consequences. But actually, you don't pick that up in a regular mental status examination.
Or they have trouble with, like, working memory. Working memory is that you're working on task A, you go to task B, and then you go back to task A, you can't remember where you were; that's called working memory, where you can't retain it to come back. Again, we don't pick that up on our regular testing, but it's incredibly important. If you're a middle-level manager with multiple sclerosis and you're sitting in a cubicle with a hundred other cubicles in the same room and you're being interrupted constantly, your performance is really terrible because you cannot go from one task to another. However, if you can get a corner office with a wall and a door that shuts and you work on one project at a time, your performance rating goes up dramatically.
So these are not just esoteric academic issues, these are things about family, jobs, living in the real world. There are ways to, like, adapt to the cognitive road, so cognitive rehabilitation is actually very important. And the medication side of it has not gotten as much emphasis as the medication side of Alzheimer's, for example.
GEVER: Yes.
BURKS: People are trying various drugs, but there's no consensus right now.
GEVER: Yes.
BURKS: But helping people adapt to their cognitive issues, something that can be done. But most physicians I think don't really understand cognitive rehabilitation.
GEVER: Yes.
BURKS: And for MS patients, that's really important.
GEVER: And how does the clinician pick this up? And I would imagine it's that the patient probably is not even aware of it him or herself much of the time.
BURKS: They probably are; they just deny it. The families are aware of it, so if you talk to the families you're more likely to get the stories. Or when we do -- there are special neuropsychology tests that we do for cognizance.
GEVER: Okay.
BURKS: And when we do those, you'd be surprised the number of times that the patients, for the first time in their life, realized they have cognitive problems and they're devastated.
GEVER: Good. You can name names here. What are the specific tests that one would use?
BURKS: Well, there are a number of batteries; they're named after people.
GEVER: Okay.
BURKS: And the key is if you're interested in that as a physician, send them to a neuropsychologist. The neuropsychologist knows the specific test that can be used, and there are a number of choices for that. And some neuropsychologists like one set of tests, another like another set of tests, but this should be a neuropsychology decision, not a neurologist's or a primary care doctor's decision, I think. We just need to get them to these people.
It's like the bladder issues. We need to get them to a urologist to get botulinum toxin, but if we don't talk about it, we're not -- they're missing the opportunity at least to explore another treatment, because the urologist has to do that.
GEVER: And I've seen depression also being on the list of common but often unrecognized symptoms in MS patients. And it would seem logical that somebody with a chronic disease, a scary chronic disease like MS, is going to be depressed about it. So, you know, what's the appropriate approach to that?
BURKS: Well, there are two issues with depression in MS. One is if you have a chronic illness and your spouse walks out and you lose your job, you know, you're going to be depressed. But MS by itself can cause neurochemical changes that can precipitate depression as well, so we have both. We have the situational depression, and then we have the MS-related depression, and, again, we're talking about half the patients have had major depressive issues in their life. When they get a major depressive issue, you can tell it; it's actually pretty easy and you put the people on antidepressants.
But the fact is psychological counseling plus antidepressants are much better than either one alone, so, therefore, you have to have -- it's a team approach to MS, you know, and I'm talking about teams. I'm talking about the psychologists, and I'm talking about rehabilitation people. I'm talking about the urologist. I'm talking about all sorts of different people that are involved in quality-of-life issues that if the neurologist becomes the captain, and making sure everybody does their job and they coordinate it, that's great, and that's what we're trying to get at, the team approach to multiple sclerosis, because one doctor can't do everything.
And the primary care doctors are spending more and more time with the MS patients as well. So it's important for primary care doctors to also understand this, because they may have more of a sense of the patients than even the neurologists who are really focusing on disease-modifying therapies; that's where they're the specialists. Because some of the disease-modifying therapies have adverse events that are significant and we really have to pay attention. What are we concerned about with this drug, this drug, and this drug? Are we making sure we're checking for all these adverse events? And by the time we get all that stuff, we don't talk much about bladders or sexual dysfunction, things like that.
GEVER: So I guess it's time to sum up here. What would really be the most important message that you would want a clinician to take away from this topic?
BURKS: It's to have a list of issues that are common, the ones we've talked about, and there are others. But the ones we've talked about are a good start, and make sure that the patients are actually asked questions about those. "How is your bladder? Are your sexual relationships satisfactory? Do you have constipation?" And then, "Tell me more about it," and then most of us know how to do something about it once we talk about it. So I think the key is recognition, taking the time to talk to the patients about things other than their lymphocytes.
GEVER: And I would imagine it's going to be helpful, too, if the doctor says to the patient, "And I can help you with that."
BURKS: Absolutely, and that's what we're seeing. We're seeing more and more treatments. Like, for example, one of the biggest fears MS patients have is "I'm going to be in a wheelchair." Well, there's a new FDA drug approved for walking; it helps them walk better. Not everybody, but worth a try, but they need to be given that option. There is a condition where people cry inappropriately; it's called pseudobulbar affect. Sometimes they laugh inappropriately, too, but it's usually crying. And they say, well, they're just depressed. No. There's a medication out, approved by the FDA, for pseudobulbar affect now, so we're talking about some pretty exciting things. And muscle spasms; you know, well, there's medications for that now. Again, Botox can be used; botulinum toxin can be used for spasticity. It's approved for upper limb spasticity, but most people don't know that yet. So we need to be aware of what the treatments are and ask the right question, because now we have treatments that we didn't have before.
GEVER: Yes.
BURKS: And it's important to get that information.
GEVER: Great. Well, thank you so much, Dr. Burks. I know it's been extremely informative for me, certainly, and I think for our audience as well, so thank you very much.
BURKS: It's a pleasure to be here. Thank you.
GEVER: In Amsterdam, I'm John Gever, MedPage Today.
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