A Patient-Centered Approach to the Treatment of Multiple Sclerosis (MS)

I'm pleased to be joined today by Dr. Rick Munschauer who is chairman and professor in the department of neurology at the State University of New York at Buffalo School of Medicine and Biomedical Sciences, and my nurse, Shirley O'Leary, from the Multiple Sclerosis Center at Texas Neurology.

MS is a chronic disease and, while we have some effective treatments, there is no cure. Therefore, the management of symptoms becomes critically important. A symptom management model that provides optimal results for patients with MS is multimodal, using communication, education and various therapies and medications. A team approach facilitates coordination of these services and avoids duplication and fragmentation for the patient and the family.

In today's discussion -- before we actually get started -- I want to remind the audience that, to the extent that perhaps some of our discussion will be dealing with symptom management, the medications that are being used are, many times, off-label indications that they are being used for. We'll try to point that out, if and when we use specific examples of that.

Shirley, I'd like to start off with you. I mean you have been doing this for a long, long time. I think you and I both know that taking care of MS is not something that is practiced in a vacuum and that there is the need and importance for quite a few other people to be involved. What's your philosophical approach to this?

SHIRLEY O'LEARY, RN: Well, I guess my philosophical approach would be that I see myself, as a nurse, as being rather a gatekeeper for the patient and being able to facilitate all the other modalities that are out there to help facilitate their care, to keep them in the best-possible shape, to encourage wellness for them. But I know that I think I can speak for most nurses that one of our strong points is education and you do a lot of that in symptom management.

But I know also that I couldn't do what I do and that my education would be really useless if I didn't have all the modalities at hand that I have, if I couldn't call on physical therapists, occupational therapists, social workers, pharmacists, speech pathologists -- and that's not all inclusive. There are so many people out there who help us facilitate this care. Without them, I couldn't do my job and I think, probably, I can speak for you both that we wouldn't be able to do what we do without them. It's a really multidisciplinary team.

TED PHILLIPS, MD, PhD: Yes, absolutely. You know, you mentioned patient education. Obviously, an important process, but one that takes a fair amount of extra time to maintain -- are patients up to speed on MS and the latest thoughts on that.

How do you think that the education of the well-informed patient -- do you think that that makes that big a difference in ultimate outcomes?

SHIRLEY O'LEARY, RN: I think it makes a huge difference. I know that, in the education process, it's very important for patients to understand the relationship between different symptoms. It's all interconnected and our management of the symptoms are also interconnected. There's little we can do to treat one symptom that doesn't somehow impact another symptom and I think, if patients are educated and understand that process, they can cope with things better.

They can let us know when things are not going well or when other problems develop, based on some plans that we've initiated that perhaps we need to take a look at and perhaps make some changes to. So I do think that's very important.

TED PHILLIPS, MD, PhD: Yes. I mean, you could almost envision that as a bit of a way, from the patient's standpoint, to gain a degree of control over this otherwise largely unpredictable disease. Control through increased knowledge of what's actually going on. Rick, how do you see this?

FREDERICK MUNSCHAUER, MD: Oh, it's quite true. I think that, in fact, as a physician when I see a patient I walk into the room and I've got just some structured information I want to get out of that patient. I want to know how they're doing, whether their MS is active, whether they have a whole host of side effects and then I want to examine that patient and I want to move on. And we're lost in this process because we aren't putting the patient first.

And I try to teach myself the discipline I learned from the nurses who work at our clinic and that is to really start with the fundamental questions about, "What would you like us to address today?" We have a limited period of time and I think patient-centered care begins with the patient and, you know, there is a significant other.

Sitting down ahead of time before the office visit and saying, "Now, look, you know, these are the four or five things that I really wonder about that are impacting my life now," and, sometimes, they make a list of it. And, very frequently, the person with the disease doesn't give the healthcare provider as much insight as the significant other of the person with the disease.

And if your physician isn't questioning you actively about what is important for you to get out of this visit then you need, before that visit is over, to tell them the three or four things. And if the doctor's beginning to walk out the door -- to stop them and say, "Oh, but this is important that I understand what's going on here." And education is key to that.

It's key that your physician also assembles a whole host of professionals that are expert in MS. To just give somebody a prescription for physical therapy and have them leave is not enough. I think it is incumbent upon us as healthcare providers to make sure that the physical therapist knows the issues about fatigue and balance and gait training and the things that may come up with the patient. Establishing these networks and these partnerships.

You know, if you went in to a lawyer, you'd tell the lawyer what you wanted in your will or your contract or your real estate negotiation. All too often, patients need to be prompted to do that.

TED PHILLIPS, MD, PhD: Yes, I think that's an excellent point. And more than once over years of seeing patients with MS, I've been impressed with the dichotomy -- as I talk with the patient and formulate my own list of what I think maybe the top priorities are, only to then turn it around, more importantly obviously, to the patient to ask them what their top list of three priorities, what they would like most addressed, only to find out that my list and their list, although sometimes the same, other times is not the same. And, I mean, whose list matters more?

Well, in the approach that I think we all should have and in the approach that we're talking about today, the patient's list matters more. And yet, we have to take the time to sometimes pull that list out of patients; some patients are more forthcoming with their true concerns than others. And it takes, sometimes, additional time to really concentrate on that.

What about actual symptom management? I mean, we spend a lot of time in these discussions talking about disease-modifying agents of one sort or another. And we tend, perhaps, to spend less time talking about what, I think in our practice, we find to occupy actually the majority of our time -- symptom management. You know, I guess you could view this as a never-ending battle. You could view it like that, you could say, "Does it ultimately make any difference how far you try to tweak the system to make the spasticity better, the paresthesias or dysesthesias better. In the final analysis, does that really make a difference in what? I guess, quality of life.

Now, I know that both of you all have similar philosophical approaches here. Shirley, what about the continual trying to better improve symptoms? Does that, in the final analysis, really make any difference?

Slide outlining the various symptoms that need to be addressed in patient-centered therapy:· Fatigue and Energy Management· Spasticity and Tremor· Pain· Bladder Control· Bowel Function· Sexual Health and Intimacy· Visual SymptomsSlide outlining side effects and other patient issues to be managed:· Therapy Side Effects· Injection Issues · Sticking With It: The Adherence Issue· Disability

SHIRLEY O'LEARY, RN: Why yes, I would have to say, in my opinion, I think it does. And that's so much of what I do on a daily basis with patients and it's such a balancing act. You know, trying to find the right combination of medication so that we reduce the impact on some other issues that may come from that.

For example, you know, if we're trying to treat spasticity, certainly we're most likely going to use some medications, perhaps something like baclofen or Zanaflex. And we're also going to use some physical therapy. But then we also have to look at the medication concerns and the side effects of those medications that are going to either perhaps weaken the muscles for the patient or, you know, develop additional fatigue for them.

So all those things have to be very finely tuned so that we get to a point where a patient's symptoms are very workable and tolerable for them and we haven't created additional symptoms or new issues that they have to deal with. So I think the tweaking is exceedingly important, to get to that fine line.

FREDERICK MUNSCHAUER, MD: It is an art and, Ted, I'd be interested in knowing how you dose Lioresal or baclofen for moderate spasticity. And what do you tell your patients and how do you prescribe it when somebody's starting on it?

TED PHILLIPS, MD, PhD: Well, usually, the context within which spasticity comes up is the patient's perception that they are doing worse and it's usually, in my experience, interpreted as worsening of the immunological, neurodegenerative process that is MS. Most of the time, patients are given hope by the explanation that "No, actually, this stiffness, this spasticity or whatever other symptom or spasticity component one might be talking about, no, this is more of a consequence of the illness and not an altogether necessarily bad consequence. However, it is something that we need to work to control better." Obviously, we all know that a little bit of spasticity can be a good thing. And so, as Shirley mentioned, it becomes kind of a balancing act.

And, also, to mention another consideration, the balancing act of what benefits may come from various medical approaches versus dealing with the side effects or drug interactions of drugs we might use and, there, again, I think this is a great example of a multimodal approach. Many times, especially in milder forms of spasticity, I think that rather than jumping right to a pharmacological mechanism of improvement, that, many times this is somebody that we would maybe first send to the physical therapist or try to get involved in stretching exercises or yoga.

I think, along the lines of what, Shirley, you had mentioned earlier, the whole package, I think that, psychologically, the getting out, the working on something, the doing of something proactive to combat this illness has benefits that go beyond just the improvement of the symptoms.

And, again, I think it is part of this almost psychological issue of trying to regain control over the situation and I think a lot of mileage can be gotten out of a proactive approach, which all of these team members feed into, I think.

TED PHILLIPS, MD, PhD: How do you identify cognitive abnormalities or significant mood disorders in MS and what do you think the impact on that is in this patient-centered approach to MS care?

FREDERICK MUNSCHAUER, MD: Yes. You know, at least in my experience, sometimes cognitive or emotional issues can be among the most difficult to immediately perceive. And I would say probably the earliest recognition really requires a close personal association with your patients. A close-enough association that, without risking embarrassment of the patient, that you can have a frank discussion, you can question directly, "Are you feeling depressed these days? Are you having any memory or concentration problems?" And in a perhaps more relaxed manner, discuss what might be the origins of these problems. Are these actually MS-related issues or are there other explanations?

In these days, I think people with MS are very quick to jump to the conclusion that any problem that they have, including cognitive or emotional problems, automatically have MS and MS only as their foundation. We know that MS, obviously, is associated and can be associated with emotional difficulties as well as cognitive, but there can be other explanations as well and, again, it takes a more -- well, I think, personal approach to patients to best figure that out and figure out a way to go forward with that. I'm sure you agree with that.

TED PHILLIPS, MD, PhD: Yes, I do. But, you know, frequently it's the nurse who comes to me and says, "Spend the extra time." Or it's the receptionist or the person who handles the discharge process who comes back and says, "You know, something's not quite right here." But patients open up to nurses more so than sometimes physicians.

Shirley, how is your approach to that?

SHIRLEY O'LEARY, RN: Well, as you alluded to before, Rick, I think that the care partner, the companion is also a good source of how things are going as far as cognition and possibly depression and as a nurse when I'm dealing with patients on the phone, oftentimes, these are part of my questioning pattern. And, also, I've got to look at the medication log and see, "Well, when did this begin?" if their complaint is cognitive issues. You know, when did this start? Maybe we have added a new medication that is playing a role?

You know, if it's depression, "Are you getting sleep at night? Are you getting exercise?" Maybe physical therapy, aquatic therapy, hydrotherapy, all those modalities can be very useful in ameliorating those types of issues.

And, again, I think, as you were alluding to before, it's a team effort for almost a cobweb of symptoms that interact with each other and it's important that our team members interact with each other. And, again, I think, as a nurse, we can be a very, very important focal point there to kind of coordinate all that therapy and the interaction so that the patient benefits the most from what we're doing.

TED PHILLIPS, MD, PhD: You know, I think, optimally, in the best of all situations, we would have a clinical setting where we have, all in one place, the entire team. You know, the physicians, the nursing staff, the rehabilitation specialists, occupational therapy, physical therapy, psychological counselors, social work, speech therapy, I mean, the whole gamut.

Most of us are, unfortunately, not lucky enough to have all of those people in one location. However, that doesn't mean that alliances cannot, nonetheless, be forged across boundaries. I think, in all communities, that, with some work, it is possible to identify the people from other specialists, such as the ones just mentioned, that may have a special affinity or a special experience and enjoy working with individuals with MS. And I think it's important and incumbent upon all of us to make every effort to further expand the circumference, if you will, of this circle of individuals, all focused on the centerpiece, on the patient, and their quality of life and their best well-being.

As we wind down to the end of this program, any last comments, Rick, from you on the whole concept of patient-centered care for this illness?

FREDERICK MUNSCHAUER, MD: It really is, as you've said, a partnership that is forged between all of the therapists, the patient and the significant other. And to the extent that we can communicate that to our patients and to the extent that the patients can recognize the physician or the nurse, as you will, as the point of entry, so that they can access all of the resources available to them, that helps us.

You know, in reality, we are busy in an office and we don't have the hour or two that it takes to address all of these issues. And so I do think it's very important to make your visit very focused in the two or three issues that you want to have addressed to your satisfaction. And, you know what? If there are other issues that weren't resolved, ask your physician for a followup appointment sooner than three, six, nine months, so that you can address those. Or find that if enough common issues are identified, then having a little meeting where a nurse can educate groups of patients or a physical therapist can talk about, you know, the approaches to managing spasticity.

We find that, running a group of people who have bladder-control problems has been very helpful for us. We find osteoporosis is very common in people with MS, men as well as women, and looking at those kinds of issues. And I think, you know, being creative about these issues is really important and most of the time, I blame the doctors for, you know, being a little too regimented in their approach.

TED PHILLIPS, MD, PhD: Shirley, any last comments from you?

SHIRLEY O'LEARY, RN: Well, I agree with everything that Rick -- Rick was saying and I support that 100%. Now, the only thing I would add is that, from a nursing perspective, I think it's important for us to encourage our patients to know that we're just a phone call away. That, you know, if there were issues that came up at the visit, as you were saying, that perhaps need a little more discussion, that we're there to do that or perhaps come in and visit on a one-on-one basis. And I think that's important for patients to know, that they have a support system that they can go to to work through whatever issues they have.

TED PHILLIPS, MD, PhD: Great. Well, we are just about out of time. I want to thank my friends and colleagues, Shirley O'Leary, Dr. Rick Munschauer, for joining us in this very interesting discussion and I think very timely discussion about the patient-centered approach to treatment. It is perhaps more than obvious that the patient is the center of our attention and, yet, sometimes, I think, with an illness as complicated as MS can be, that, in the busy practices that we all have, we may sometimes lose sight of the fact that there are many additional people who make up a very important team who can, by addressing various different aspects of this disease, can help each one of us, in our roles, do a better job for the patient who, after all, is the most important member of the team.

Thank you very much for your attendance at this program. I'm Dr. Ted Phillips.

TED PHILLIPS, MD, PhD: I'd like to thank my friends and colleagues, Shirley O'Leary, Dr. Rick Munschauer, for joining us today and also thanks to the audience for joining us. I'm Dr. Ted Phillips.