Shared Decision-Making Between Patient and Provider in MS Treatment Planning

WATCH TIME: 6 minutes

EP: 1.Dual Perspective on Recognizing the Elusive Early Signs of a Multiple Sclerosis Diagnosis

EP: 2.Dual Viewpoint on Diagnostic Testing Strategies for Early Multiple Sclerosis

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EP: 3.Shared Decision-Making Between Patient and Provider in MS Treatment Planning

Early signs and symptoms of multiple sclerosis (MS) can be subtle and varied, often leading to initial misdiagnosis or delayed recognition. These may include visual changes, numbness, fatigue, or mood-related concerns, which can be mistaken for more common conditions. To reach an accurate diagnosis, clinicians typically rely on MRI imaging and other specialized tests to rule out alternative causes. Once MS is identified, shared decision-making between the patient and clinician may be essential, aiming to guide individualized treatment strategies and support long-term disease management.

In collaboration with National MS Society, NeurologyLive^® held a roundtable discussion with an MS expert and patient living with MS who talked about the early signs of the disease and the impeding challenges that can delay diagnosis. The featured guests included neurologist Ellen Mowry, MD, director of the Multiple Sclerosis Experimental Therapeutics Program at John Hopkins Medicine, and Nicole Boschi, PhD, director of regulatory affairs at the National Multiple Sclerosis Society, who spoke on the importance of patient-clinician collaboration in navigating care and treatment planning.

In this third episode, Mowry and Boschi reflected on the collaborative process of developing a treatment plan for MS following diagnosis. Mowry outlined a stepwise approach that includes setting expectations, conducting baseline testing, and aligning therapy choices with individual patient factors, such as comorbidities, life plans, and preferences. Nicole shared her experience navigating initial treatment decisions, balancing clinical goals with lifestyle considerations, such as travel and needle aversion. The discussion highlighted how mutual understanding and adaptability are key to effective MS management.

Transcript edited for clarity.

Isabella Ciccone, MPH: Another question that I have for you both is that there's a lot of talk about the patient-provider relationship. So, what does a decision-making approach look like from the provider and patient perspectives to co-create a treatment plan, ultimately, after having a diagnosis?

Ellen Mowry, MD: Well, I can give you my perspective as a physician. I usually like to explain to people when we are first meeting—maybe even before we're at the point of being able to think about treatments but where we have decided, "Well, we think we're on the right track in terms of a diagnosis of MS"—just the very high-level rationale for why we use treatments and what different kinds of treatments are for MS.

For example, I like to split the treatments into those that are meant to prevent future things from happening, like future attacks and new spots, compared to treatments that are designed to help people feel better from symptoms that have already developed. Because the MS-specific treatments, to the best of our knowledge, don’t really make old symptoms go away. Instead, they prevent new things from happening. So, I like to set that expectation and then just give a little bit of history of the development of treatments over time.

But a lot of times, before we narrow in on a specific set of treatments to consider, we do need to do some blood tests because certain medications are contraindicated or are more cautionary for people who have abnormal results for one or more of those tests.

And so it can be super overwhelming, by the way. My experience is that it's just a lot of information for people to receive all at once. And so to try to dig in and go through an immunology lesson and discuss every medicine and all the risks and benefits—it's just too much for any one human to receive that information all at once.

So, we set the expectations: What’s the reason for using treatments? We’re going to get these blood tests, we’ll come back, and then let's use the narrowing-down approach based on the blood tests and what we already know that might not be great for that person. Maybe they have migraine or something, or anxiety or depression, and so certain medicines may make those worse—that helps narrow things down. And then also, hear a little bit about people’s life plans. Are they planning on having kids soon? Are they someone who’s going to be traveling a lot? Some people don’t like swallowing pills. We’re all humans. We all have our own things that might make us think more about one particular situation compared to another.

And so, in my estimation, the key is to try to work together to figure out a treatment strategy, but knowing that every time, it’s a conversation. And if the first strategy doesn’t work—because it’s not controlling the MS, or because it’s causing side effects, or other things we weren’t expecting—there’s always a chance to pivot.

That’s the gift of all the research that’s been done: there are now about 25 medications for MS. When I started on this journey in this career a long time ago, there weren’t any—or there was just one that had newly emerged. So, it’s been great.

Isabella Ciccone, MPH: Nicole, do you have anything you wanted to add to that?

Nicole Boschi, PhD: Yeah, it was great being able to sit down with Dr. Mowry and discuss what I wanted from treatment—not to have further progression, to essentially stay the way I am. Also, as I mentioned, I love to travel, so something that would fit—we usually travel twice a year—something that would kind of fit into that schedule.

I mentioned my fear of needles, and although we did choose a treatment that involves infusions, I made it very clear that I didn’t want to let my fear of needles stop me from pursuing the best treatment for me. So, I have my first treatment this Friday, and I’m going to get through it.

Isabella Ciccone, MPH: Now that’s courage, because I also don’t like needles.

Ellen Mowry, MD: "Courage" or "courageous" is a good word to describe people with MS. I think maybe one of the hardest things about the human condition is uncertainty. And especially in this phase of diagnosis—getting the diagnosis and starting on that first treatment, and holding your breath—it does take a lot of courage. I’m always in admiration of the people I serve in that respect.

And one of the neatest things, though, is to see somebody at that sort of 6-month mark where they’re like, "Oh, I’ve got this." It’s really a fun transition to witness. And how I say it, from that point on, you’re the teacher, right? Like, you’re the one who’s teaching us.

Nicole Boschi, PhD: Yeah, and I think learning to live with the unpredictability of this disease... I’m someone who’s always been very much a planner, and having to realize that every day for me is going to be a little bit different. Like, for example, yesterday I had a lot of fatigue, but I woke up this morning and I feel fine. So, it’s learning how to live life with an unpredictable disease and trying to manage that while also still doing the things you love.