MS and Quality of Life, a Clinical Context Report

Reviewed by Robert Jasmer, MD; Associate Clinical Professor of Medicine, University of California, San Francisco and Dorothy Caputo, MA, RN, BC-ADM, Nurse Planner

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.