Wellness Programs in Multiple Sclerosis Elicit ‘Stepwise’ Changes

Brian Hutchinson, PT, MSCS

Ensuring a good quality of life for patients with multiple sclerosis (MS) is a multifaceted task, with recent findings suggesting wellness programs may have an added benefit. Using patient-reported outcome measures, investigators determine improvements in self-reported disease impact and quality of life for patients participating in weekly wellness sessions via the Multiple Sclerosis Achievement Center (MSAC).  

Three-year data presented at the 2021 Consortium of Multiple Sclerosis Centers (CMSC) Annual Meeting, October 25-28, showed that patients with MS who participated in weekly programs had statistically significant improvement in sections of the NeuroQoL, including Ability to Participate at year 2 (P = .02) and at year 3 (P = .004), as well as Social Roles at year 2 (P = .001) and at year 3 (P = .004). Significant changes were also seen in the Multiple Sclerosis Self-Efficacy Scale-10 item (P = .02) and the Multiple Sclerosis Impact Scale (P = .03), according to 3-year data analyses.

Brian Hutchinson, PT, MSCS, director, MSAC, Dignity Health, in Sacramento, California, sat down with NeurologyLive to provide an overview of the program, which is available in both 5-hour and 2.5-hour formats, as well as a summation of findings. Hutchinson noted that investigators saw “stepwise” changes in social components, followed by improvements in internal beliefs about capabilities. Year 4 data, which Hutchinson noted may be affected by the COVID-19 pandemic, will hopefully show behavioral changes as patients with MS continue to actively participate in weekly wellness programs. 

NeurologyLive: Can you provide an overview of the wellness program? What did the weekly programs entail?

Brian Hutchinson, PT, MSCS: We provide an ongoing program, and that program entails a mixture of physical activity—exercise programs, cognitive stimulation, education, and socialization, is the best way to describe all of those things. We have 2 different formats, 1 is a 5-hour program, so it's a day program in which people attend and they participate in a series of physical activity, or exercise programs, both in individualized format, as well as a group format. Those group exercises might be yoga, they might be Pilates, or they might be other types of group activities. The individualized exercise is in a group setting, but individualized to that particular individual's goals and needs. 

The cognitive stimulation program is primarily done with electronics or tablets. We use a series of games and applications in which people can challenge themselves cognitively, in order to hopefully be stimulated in that fashion—a little bit of ‘brain training programs.’ The education is wide ranging and can entail things on areas of wellness, like nutrition, general concepts into exercise and cognition, and they may be more specific to recapping a specific topic, like fatigue or spasticity or other things. Those discussions really are not in a typical didactic format, they are more discussion-based—people sharing ideas on how they manage those different symptoms and how they manage areas of wellness like diet and exercise.

The socialization component takes a number of different forms. I mentioned people gather in a gym, in both a group and an individualized format—there's a lot of informal socialization that takes place there. In the 5-hour program, we have people that gather and participate in lunch together, so a lot of conversation takes place there. There's just an opportunity for individuals to participate in social activities also. 

A second form which that program takes is a 2-and-a-half-hour program that individuals attend and participate in the education, exercise, and cognitive stimulation programs. This was really developed from what we heard from individuals, saying that 5 hours seemed like too much. These are really for individuals who may be traveling from a further distance, perhaps they are part-time employed, and therefore, they can't take 5 hours out of their day, but they can take 2 and a half. The data that we presented is from both of those groups of individuals over a period of time.

What were the key findings? Were any surprising to you in any way?

We saw changes in quality-of-life improvements, particularly in the social domains of the Neuro-QoL. The ability to participate in social activities, as well as satisfaction with social roles and activities—that's where we saw our changes, and we saw those occurring a little bit earlier. This was 3-year data, so it was looking at individuals who had been participating in our program for at least 3 years. The changes in those particular domains started to appear after the second year, so that was interesting to see. Whereas we did not see some of those changes at year 2 in other areas that we measured, more specifically, areas that really look to measure internal beliefs of capabilities and abilities—things like the Multiple Sclerosis Self Efficacy Scale, and the Multiple Sclerosis Impact Scale-29 item—we did not see changes in those areas at year 2. We did see sustaining of the Neuro-QoL changes at year 3, and then saw some changes in that Multiple Sclerosis Self-Efficacy Scale, as well as the MSIS 29. Those were statistically significant at 3 years, and that was an interesting finding to me.

Ultimately, what we want to see is behavior change, in that we want to see people being able to make these lifestyle changes, whether it be in the area of nutrition, exercise, and the like. We did not see significant changes in our physical activity measure, which was the Godin Leisure Time Exercise Questionnaire, but we did start seeing some trends at year 3. We saw trends over time, and that data was presented, but we did not see a statistically significant change. We also saw some minor changes in depression, and that was an interesting finding also.

One of the things that that we're looking at, and perhaps surmising from that is that, based on our particular group of individuals, what we saw was almost this stepwise change—we saw changes in the social components, followed by those changes in the internal beliefs of capabilities and abilities. Then now we're starting to see trending towards maybe those behavior changes and exercise. I guess it's not really surprising, although it was surprising to see the numbers.

We hear from a lot of people as they come into our program—hesitancy about being around other people, potentially, that may be worse off than them. We also hear hesitancy about being able to participate in various physical activities or any activities based on past experiences. The ability to gather weekly with the same individuals, and like I said, these are individuals that have been coming at least 3 years, so they've gotten to know each other very well. What we've heard empirically, before even analyzing the data, and probably even earlier on—after 6 months, after a year—is that people are feeling more comfortable, forming friendships, feeling more mobile, feeling more active. However, it may not necessarily bear out in those outcome measures that we have for a longer period of time. We didn't see that particularly show a change or significant change until year 2 in some of those social domains, and then some of those internal belief mechanisms may be changed at year 3. Hopefully, we will continue to see a stepwise progression in some of those behavior changes.

We do look to analyze our year 4 data and hopefully present that down the road. Maybe we'll see some of those behavior changes, and hopefully sustaining some of those other areas. I will say the caveat from that is our year 4 data will be [from the COVID-19] pandemic. The measurements that we took in the beginning of 2021, which have yet to be completely analyzed, may show some dips in certain areas. We did continue with our programs, some more internet based, so we're hopeful that that was enough to keep people socially engaged, as well as feeling good about the internal aspects of their capabilities, as well as activity levels.

Is there anything else you would like to add?

I believe that [the wellness program] is an important adjunct from a comprehensive care model. It certainly doesn't take the place of managing the disease, it doesn't take the place of rehabilitative interventions, when people need those, but it is a way in which people can stay more engaged. We would love to be able to examine how this affects areas of healthcare utilization, but that is perhaps down the road.

Transcript edited for clarity. For more coverage of CMSC 2021, click here.

REFERENCE

Hutchinson B, Schafer J, Sayre L, Malone, T. Effects of weekly participation in a wellness program on people living with multiple sclerosis: A 3-year analysis. Presented at CMSC 2021; October 25-28, 2021; Orlando, FL. Abstract REH02.