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Amit Bar-Or, MD, FRCP, FAAN, FAN; James Stankiewicz, MD; Fred Lublin, MD; Claire Riley, MD; Timothy Vartanian, MD, PhD
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Panelists engage in a reflective discussion around how patient preferences play in the shared decision-making process
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Welcome to the Great MS Debate.
DR. LUBLIN: Hello. This program will be a debate and reflective discussion with current treatment paradigms in multiple sclerosis, the potential role of the early high-efficacy therapy and how patient preferences come into the play in the shared decision-making process.
DR LUBLIN: In this first section, we will have a brief discussion on current treatment practices and what patients and healthcare providers are looking for. The market itself, not just the current health and environment, continues to evolve, as we now have more than 18 approved products to consider for the treatment of our patients, which makes selecting a disease management approach challenging.
What do patients and physicians find important in MS treatments and what are their concerns?
DR. BAR-OR: Well, one important concern that is shared by both patients and clinicians is how to preserve neurological function and slow down or ideally halt the accumulation of disability.
DR LUBLIN: Exactly. The goal should be to preserve neurologic function and to slow disability accumulation. Let's take a moment to discuss the concerns of both patients and healthcare providers.
DR LUBLIN: Claire, can you tell us a little bit about what we should consider from the patient perspective, about the concerns, about patients and healthcare providers?
DR. RILEY: I mean I would first echo, sort of a -- I think it's a little bit more like, I think it's a little bit more like dating, that when you start out with one immunotherapy, I try to reassure patients that this is not forever. Though if it works well for them, great. But they need to, you know, respond and be able to tolerate the therapy.
So some data on what people are concerned about though, includes they're essentially concerned about being able to remain independent and find a therapy that accomplishes that, but also doesn't have too high a risk of adverse events. So finding that balance between efficacy and safety, which is I think pretty congruent with what collisions want and certainly in my practice we are seeking to find that balance.
DR RILEY: Importantly, I think neurologists and MS patients have, you know, some overlap in terms of what they're most concerned about. But the differences are important. So while neurologists note that control of relapsing, control of disease progression, as well as safety as among their top concerns, patients are more likely to say that they're interested in sort of the impact in their daily life that a medication will have. So potentially some tolerability issues, and they rate that relapse control and disability progression a bit less highly. So I think we have to keep it in mind that we may come from, you know, with some different goals and try to meet our patients where they are, as we talk about what immunotherapy is best for them.
DR. LUBLIN: Hence the importance of this long conversation and getting longer between the prescriber and the patient to get a good match of what works for them and what the physician thinks will be the best approach.
DR LUBLIN: So these are critical areas for healthcare providers and patients. What does the process look like for addressing those most pressing concerns and why is it so important? Tim?
DR VARTANIAN: Thanks, Fred. And I definitely agree with what Claire just said. I think, you know, I found that when the patient is very involved in the decision-making process that outcomes are better and that's for a number of reasons.
One is that the patients really want to understand what the adverse events are. You know, what potential risks they have for medication. They certainly want to understand efficacy and relative efficacy, and they need to understand what the monitoring involves, and why that monitoring is being done.
A number of studies have shown that when patients are more involved with the decision-making, when the physician is giving them more information about not just efficacy, but about adverse events and monitoring, that they are more invested in their therapy, they're more likely to be adherent and outcomes are better. And I think the other important point is that this is an ongoing process, because stuff happens. There is a relapse or there is a disease progression, and it's better if all of that has been explained before, so that there are no surprises, or if there are surprises, at least can be explained.
DR. LUBLIN: As you've explained, Tim, a shared decision-making approach between the providers and the patients is key for disease management to be successful. Jamie, tell us about why this is such an important consideration?
DR. STANKIEWICZ: So I would echo the comments that have been made by Dr. Vartanian and Dr. Riley and just a little bit of what you said, Fred, but I would kind of expand that a little bit and to give some perspective around this; that I think there is a disconnect between what a patient thinks they might need early in disease and what they actually need.
There is a paper that's published showing that patients when they have less disability and earlier in disease favor medicines that have fewer side effects and worry less about efficacy. Whereas, later in disease, when patients have more disability, they're more apt to take a stronger medication and worry less about side effects. But I would argue that that's exactly the converse of how we should be approaching the disease. That, in fact, we should be using highly effective therapies early in disease and educating patients that they really should be on high-efficacy agents, at least in my view, in the beginning and also I think there should be, you know, I think a shared decision-making is very important. I don't think there is any question about that and that's how you are going to get patients be happy with their therapy and to adhere to their therapy.
But I think part of their shared decision-making is educating patients around the disease and what it looks like and what is at most to their advantage
So I think that's just, sort of, to the extend some of the comments that have already been made.
DR. LUBLIN: So, Jamie, in that early, not very badly involved population, there is a significant percentage who come in and safety is their number 1 concern. Because they're not so badly involved, and they're really are heavily concerned about safety, they'll ask you the question you know is coming up is how long has that drug been on the market. And that's a typical one to put forth, because sometimes they equate you saying, I want to put you on the most active drug with saying that their disease is more serious than they perceive it.
DR. STANKIEWICZ: Well, I think some of this also even in how you communicate to patients. I think one
word that I really try to avoid is "aggressive." I will say to patients. I think we want to put you on a highly
effective therapy, and I think – and I'm careful to emphasize with some of the therapies that we have now that I don't think they're ceding a lot in the way of side effects or safety, and so, you know, we will discuss individual drug and profiles. And I also like to give perspective, at least my perspective, which I think has some validity around the disease and that early in the disease where you have the greatest opportunity based on how I read the literature, to influence the course of the disease. And so I think it's important to patients have some perspective on that, because they're walking in oftentimes without a lot of information about the disease.
DR. LUBLIN: Okay. Thanks for your thoughts. We agree that continued communication between the healthcare provider and the patient seems to be a crucial step that can help inform the patient, so that the patient can participate in the treatment decisions, which will ultimately lead to the better treatment adherence and satisfaction.
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