Patient Perspectives on Outcomes in MS Relapse

Stephen Krieger, MD: I think all the things we’ve talked about here are the things that we can assess, and so I’ll turn to you to close out this section, Amy, and say, how about the patient’s perspective? What is the effect on quality of life? What do you look for to gauge whether the treatment strategy for a relapse or the treatment strategy in general is actually optimizing that patient’s existence in this world, outside the minutes that they spend with us being poked and prodded and otherwise assessed in the office?

Amy Perrin Ross, APN, MSN, CNRN, MSCN: I do a lot of phone management. And sometimes it feels like phone chit-chat or socialization. So when I go home, I don’t ever answer the phone. But you know 1 of the things that we do in about a month is the follow-up for the ARMS [Assessing Relapse in Multiple Sclerosis] questionnaire.

But if I know these patients, I’ve gotten to know them, I talk to them about themselves and how they are. “How are you doing with the kids? How are you doing with that new computer system at work?” They can say their walking has improved, but if their walking has improved, but they’re fatigued by the time they get to the office from the train, maybe this hasn’t been the success that I had wanted it to be. I try to get to know them. I try to individualize it. As you say, look at what the impact has been on their quality of life. Having a relapse is a blow to your quality of life no matter what kind of relapse it is. Sometimes we want to get them back to the baseline. Sometimes with steroids they go well above the baseline, and we have to establish where that is too.

Are they just still coming down from steroids or aren’t they? And then 1 of the even tougher questions we ask is, all right, we’ve had a relapse, and we’ve treated the relapse. Now what? Do we look at a new disease-modifying therapy with the whole issue of NEDA [no evidence of disease activity]? How tolerant are we of a relapse? How bad was this relapse? What precipitated it? Might there have been things that we could do? Is it time to then make a change? Is it not? How do we assess adherence? This opens up a whole other bag of issues for us to address. I really look at the impact that this relapse has had on their quality of life.

Stephen Krieger, MD: And it impacts them emotionally too. If somebody thinks that they’re doing well on the treatment that they’re on and then this occurs, oftentimes it can feel like an even bigger setback for somebody than it might have been physically. I think it’s an excellent point. I had a patient quite a number of years ago who said that every time something happens to her from her MS [multiple sclerosis], she felt that she needed to construct a whole new idea of what the new normal is and rebuild her whole sense of how she navigates the world. And that’s emotionally exhausting, as well as sort of unsettling for people. I think addressing that unpredictability, helping them navigate after an event—even if it seems minor from the way we looked at it—is an important part.

Amy Perrin Ross, APN, MSN, CNRN, MSCN: A term that we often throw around as clinicians is treatment failure. I try to wipe that out from my vocabulary. And I talk to the patients about how, “You’re not a treatment failure, and you’re not a failure. You may not have a responded as optimally as we would have liked to treatment X, Y, or Z. Let’s think about not driving off the cliff but modifying the road a little bit.”

Samuel F. Hunter, MD, PhD: I like that.

Robert Bermel, MD: And you know, Stephen, I love the sentiment that you expressed about how to address the implications of a relapse really with the whole patient in mind, the whole person. That brings to mind the team concept of MS care. It’s something we see here manifest at the CMSC [Consortium of Multiple Sclerosis Centers] in a very real way with a multidisciplinary attendee attending this meeting. And we can’t forget the importance of leveraging the rest of the team, such as a physical therapist. In our practice, health psychologists deal with the stress and the uncertainty of what’s happening and help people frame that and get it under control. Occupational therapy, social work—all the implications of this really require a team in the best-case scenario. We’ve talked a lot about medications and how we do the neurology decision making. But from the patient’s perspective that’s really only a small sliver of things.