NeuroVoices: Kathy Zackowski, PhD, OTR, on Promoting Psychosocial Wellness Research in MS Care

Kathy Zackowski, PhD, OTR

(Credit: Dignity Health)

At the 2025 Consortium of Multiple Sclerosis Centers (CMSC) Annual Meeting, held May 28-31, 2025, in Phoenix, Arizona, the independently supported symposium “Thriving with MS: Harnessing Wellness Research & the Power of Health Coaching” highlighted the growing importance of wellness in multiple sclerosis (MS) care. Jointly presented by CMSC and the National Multiple Sclerosis Society (the Society), the session opened with remarks from Sarah Anderson, PharmD, NBC-HWC, and Kathleen Costello, CRNP, MSCN.

The symposium then had experts Kathy Zackowski, PhD, OTR, and Dawn Ehde, PhD, speak on how wellness research initiatives, particularly those focused on psychosocial and behavioral health, can translate into practical tools for clinicians and improve patient outcomes. Additionally, speakers Amy Behimer, PharmD, NBC-HWC, and Cassandra Moore, MPH, CPH, presented on the role of health coaching in empowering patients to make sustainable lifestyle changes. The session concluded with a Q&A and closing comments from Anderson, underscoring the value of integrating wellness and coaching into standard MS care.

In a new iteration of NeuroVoices, Zackowski, associate vice president of research at the Society, provided an outline of how wellness research initiatives, especially those focused on psychosocial factors, can inform and improve clinical decision-making in MS care. She highlighted recent efforts, including the development of targeted surveys and a wellness research working group, aimed at identifying modifiable factors in people with MS. Zackowski also emphasized the importance of expanding definitions and outcomes in wellness research as well as tailoring interventions to underrepresented populations and progressive MS cases.

NeurologyLive: How do wellness research initiatives help shape day-to-day decision-making?

Kathy Zackowski, PhD, OTR: It’s a really good question, because I think even just defining wellness is often hard. A research initiative is simply a focus on a needed aspect of MS, in our case, and so a wellness research initiative is a focus on health behaviors that positively impact a person's sense of wellness. In MS, it turns out this has been really, really limited.

We know people with MS have a lot of experience coping with the uncertainty that goes with having a variable, progressive disease, and they rely on the use of disease-modifying therapies. But they’re also really asking for approaches that are nonpharmacological, “are there things I can do right now to help with my wellness?”

There’s data to show that people with MS would benefit from common things like a balanced diet, regular exercise, and low stress. But the problem is we don't really know what diet is best, what type or dose of exercise is important, and what psychosocial approach can really help someone lower their stress. So, the initiative is really intended to try to inspire people to be thinking about this and do studies related to it.

At the Society, we created a wellness research working group, and there's one branch that we talked about here at the meeting and that is the Psychosocial Wellness Research Group. The objectives of that group are to generate and promote high-quality psychosocial wellness science, translate new evidence into practice and programs, and to provide a network to collaborate and train junior faculty, students, and trainees to understand wellness, study it, and put it into practice. Research on wellness approaches really needs to be done, so clinicians know what to tell their patients, and it’s not just a guess of what diet or stress reduction is most important.

Can you share a particular example where wellness research can directly help to improve patient outcomes for care delivery?

There are several examples of this. I mean, an obvious one is exercise, right? So there's been a lot of research already on exercise and trying to identify what type of exercise is really important, what are things people with MS can do, and what are more difficult to do?

But I think there's also some new work that I wanted to highlight, and that is the Psychosocial Wellness Research Working Group is doing a study where they're using a survey that they created after talking to people with MS. They created these focus groups—groups of 10 or 12 people with MS—and they spoke to them about: What does psychosocial wellness mean to you? What are you looking for? Then they created a survey and gave this to 1200 people with MS.

What they found is that psychosocial wellness is not very affected by factors like sex, race, age, and even physical disability, which I found a little surprising. But not surprisingly, psychosocial wellness is hard to sustain in the context of high emotional distress, financial stress, people feeling discriminated against, or symptoms like fatigue and cognitive problems.

These findings from the survey really highlight the need to study factors that are in a person but also in their social environment, because both of these are modifiable and have far fewer adverse effects potentially than a medication. But really, we don’t know at this point which interventions would be most helpful.

I wanted to also share with providers that psychosocial wellness is not just about being distressed. There are 3 components that I’m hoping people will think about when you see your patients. One is emotional well-being and that’s positive emotions like happiness or satisfaction. A second one is psychological well-being and this is well-being associated with realizing one’s own potential, the growth that you think you can have, kind of living authentically. And then the third is social well-being.

Social engagement refers to well-being that emphasizes that you feel like you have meaning in your life and purpose and self-realization. Rather than just pleasure or happiness, it’s a conglomeration of those 3 things that really helps to build someone's psychosocial wellness.

What are some key gaps in wellness research that, if addressed, could better support clinicians and patients?

I'm going to refer to a paper that we have submitted now for publication, where we did a scoping review. This was done to determine the current state of the wellness field, identify knowledge gaps, and stimulate more focused studies. Based on the review’s findings, we have 3 specific research recommendations that we think would really make a difference in the field.

One is that we need to expand our definition of wellness beyond simply quality of life. We need to figure out what outcomes are needed to improve quality of life and evaluate outcomes like resilience, positive affect, and social participation. Again, combining multiple features of what would make up wellness.

The second recommendation is that we need to expand psychosocial wellness interventions to focus on potentially unique wellness needs of adults with progressive MS, older adults with MS, and those from racial and ethnic groups that are commonly underrepresented in MS research. Ant then a third recommendation is that there's a significant gap in our understanding of for whom the existing interventions are most effective. It sounds simple, but those 3 things are still really areas where we think research needs to better understand.

Transcript edited for clarity. Click here for more coverage of CMSC 2025.

REFERENCES
1. Zackowski K. Importance of Wellness Research Initiatives & Examples of How Research Translates into Practice. Presented at: 2025 CMSC Annual Meeting; May 28-31; Phoenix, AZ. Thriving with MS: Harnessing Wellness Research & the Power of Health Coaching.