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Clinical Care Gaps in the Management of Multiple Sclerosis Among Obstetric and Gynecologic Clinicians

Author Katherine Knox, MD, FRCPC, was the first author of 

Physical Activity in Multiple Sclerosis: Real-World Data From Saskatchewan, Canada

International Journal of Multiple Sclerosis Care

Knox is an associate professor in the University of Saskatchewan's Department of Physical Medicine and Rehabilitation, as well as the provincial department head. She is also a clinical investigator with the Cameco MS Neuroscience Research Center at the University of Saskatchewan and the MSCanRehab Network, with a focus on gait, exercise behavior, long-term outcomes, and quality of life for people with multiple sclerosis. Her clinical practice includes neurorehabilitation services, with a special interest in multiple sclerosis. Her fellowship training was done in physical medicine and rehabilitation at the University of Saskatchewan in the mid-2000s, and her degrees were completed at McMaster University. 

recently to discuss the approach to the paper and its findings, her career path, and her research.

: Tell us the story of this paper. Where did the idea come from, and how did you form the team of authors?

 The story actually started [with] Dr Walter Hader Sr. He established one of the first multidisciplinary clinics in Canada back in the 1970s, and he was meticulous with data collection, real-world data collection. Then, in 1997, when we were able to access Betaseron—the first disease-modifying [DMT] treatment for MS [multiple sclerosis]—in Saskatchewan, the minimum data set expanded and an infrastructure for real-world data collection was set up in partnership with the Ministry of Health.

Because of that long-standing partnership and infrastructure, when the first 

 were published in 2013, [they] allowed us to fairly quickly add physical activity data to the data that we were collecting in a real-world setting of people accessing disease-modifying therapies in Saskatchewan. Those first guidelines for physical activity in MS were published by Amy Latimer and Kathleen Martin Ginis and [their] team. We decided to add the Godin Leisure-Time Exercise Questionnaire to collect physical activity behavior data.

It was pretty easy to bring the team together because we had some people who were really interested in MS here at the University of Saskatchewan. [Charity] Evans completed her postdoc at UBC [University of British Columbia] in MS pharmacoepidemiology, and she had joined [the] faculty, so she was a natural fit to join the team and help us analyze these real-world data, along with Sarah Donkers, who completed her PhD in exercise behavior and people living with MS at the University of Saskatchewan, so she was also a natural fit. And then we reached out to the Clinical Research Support Unit for some statistical support for the analytical portion, and we were really pleased to have a great team that joined us, along with a master’s [degree] student from their group. So that’s how the team came together, and that’s how the story started.

: What about this research was surprising to the team of authors?

There were actually 3 things that surprised me. The first is that we did not observe a statistically significant trend in physical activity levels over the 7-year data collection. The second was that prior DMT exposure was not associated with physical activity levels, and we had hypothesized that it might be. And the third was that there was quite a bit of fluctuation year to year in the proportion of people who met the threshold of activity level [that was] significant for substantial health benefits.

From all three of those points, I think there are some take-home messages. The first is this difference between statistical significance and clinical significance. Although we didn’t see a statistically significant finding, we did see that the physical activity levels are trending in the right direction. Over the 7-year span, it would be an average of about an additional 15 minutes of moderate physical activity over the course of a week. It’s not going in the wrong direction, which is good.

In terms of the fact that prior DMT exposure was not associated with physical activity levels, I think this is really important, because when people start a disease-modifying treatment, they’ve had a touch point with the health care system. They’ve had an opportunity for us to at least screen and try to intervene with health behavior modification. One would hope that if they touch the health care system for their DMT treatment, they’ve also had an opportunity to address their health behaviors, and we did not find that to be the case. So that’s really an opportunity there.

The third point is the fluctuation year to year in terms of the proportion of people who were not significantly active for health benefits: We saw quite a large variation, between 35% to 60% year to year. I think it just highlights the point that you can see variability year to year, and if you only have several points or time points of data collection, you don’t get an idea of what’s happening over time. You need that prolonged period of time to see if there are changes in behavior in real-world data. Those were 3 things that stood out for me.

: Do you have any comment on the difference between the physical activity recommendations vs your findings with the real-world implications? Why is there a disconnect there, that people with MS and clinicians aren’t acting on the recommendations?

Recommendations are important. We did see, right after the recommendations were published—in the year following—we did see a little blip, or a little increase. But then it wasn’t sustained. Whether that was associated with that publication or not, we can’t tell, but I think the point is that we need more than recommendations. We also need the infrastructure to implement the recommendations, which is really critical. The 

2020 updated physical activity recommendations 

recommend that a person should be connected with an exercise specialist in MS early on in the disease course, either a physiotherapist, an occupational therapist, or an exercise specialist who has some background in multiple sclerosis. The challenge is that in many of our health care systems, those people are difficult to find or they’re taxed out doing other things. It’s a starting point to have those recommendations, but we also need the infrastructure to deliver them.

: If there was only one takeaway from your paper, what would you want clinicians to have learned or have in their heads after they read your paper?

The most important thing is to recognize that there is still a subgroup of people, approximately two-thirds, who are insufficiently physically active for health benefits. At the very least, I think clinicians should screen for that group of people and then, as per the guidelines, refer them to somebody who can help them change their health behaviors to become more physically active. If there aren’t support people to help them do that in your system in which you work, advocate to have those resources put in place.

: Do you have anything to add about the potential clinical impact of the paper and what you would like to see come from it?

We don’t yet have a really clear, validated way to screen. The current physical activity guidelines are for 150 minutes per week of moderate-intensity physical activity or lifestyle physical activity—moderate meaning that you can talk but you can’t sing while you’re doing the activity. Conceptually, we don’t think in 10-minute intervals, so 150 minutes per week [was] actually hard as a screening question. I think we need to look at different types of screening questions, such as, “Are you moderately active for less than 45 minutes a week?” That’s the subgroup who is really insufficiently active, and they’re the ones who are likely to reap the most health benefits. Targeting that population is really important with a screening question that identifies that subgroup.

: What do you think the next lines of this research are? Is that a new screening tool or a new validated measure?

Really, the research needs to focus on the cost-effective, systemwide supports that we can put in place over the disease course for physical activity. I’m hopeful that the screening part will be relatively simple by just adjusting the screening question slightly to target that most at-risk population. In terms of those systemwide interventions, it’s having those people trained and available to help people, over the disease course, modify the activity so that it’s feasibly practical and convenient for them to do as they age with MS, starting early in the disease course.

: Is that your current area of research, or what else are you currently working on?

We only have about 1.2 million people in Saskatchewan and a very high prevalence of MS: about 313 per 100,000. That’s about 3500 people living with MS. What we are working on is, if we do implement effectively a systemwide approach to change health behaviors and people living with MS, because it’s a relatively small population, although it’s diversified across a large geographical area, I would like to be able to see that trend that we saw in this paper become statistically significant and see physical activity behaviors continue to change over the longer term. We’re continuing to collect longitudinal, real-world data on physical activity, and we’re working with partners to implement system supports to remain active.

One of the programs that we started in the pandemic is called 

, in partnership with MS Canada, the Saskatchewan Health Research Foundation, and other partners. This is a virtual online program that targets any person living with MS. It’s done seated, so a person doesn’t need to be ambulatory to participate. We’ve also piloted an individualized physical activity coaching support program for people living with MS, and what we would really like to do is to increase the scope of that project to reach a greater number of people because it was successful in targeting those people at highest risk for adverse health outcomes in the lowest bracket of physical activity levels.

It’s a value-based perspective. I really believe that it takes a community to raise a healthy child, and I feel the same way about health care. We can’t just work in silos. We need to look at the whole system. When you do make a system change and you see that it’s been really helpful, it just adds fuel to the fire that you want to make more such positive changes.

: Can you give us the 10,000-foot view of how this line of research fits into the larger world of MS care?

In the big picture, health behaviors are critical for optimizing health outcomes and function in MS. We know that the high-efficacy disease-modifying therapies, in particular, have really reduced the risk of relapses that are associated with disability, but we have not delivered a product that helps alleviate some of the comorbidity that’s associated with maladaptive health behaviors in MS. I think that we can deliver a health behavior intervention product that could have a significant impact on health outcomes by addressing those modifiable comorbidities with health behaviors, such as hyperlipidemia, hypertension, diabetes. We know that approximately one-third of people living with MS have at least one vascular comorbidity, and that’s associated with more rapid disability progression. We have these very costly disease-modifying therapies for which access to treatment, at least in Canada, is often quite good, but access to support for health behaviors is still a huge gap. I think we can expect, in the 10,000-foot view, to continue to see improved health outcomes if we target this in a more systematic way.

And by a product, I mean to deliver a service that is integrated within our health care system. For example, if you are diagnosed with MS today, you’re referred to a multidisciplinary clinic but you’re not necessarily connected with a coach or a person who has expertise in physical activity or other health behaviors for best health outcomes. That’s what I mean by product—a product that can reach the population but also is individualized to that person’s need, targeting the people who are at greatest risk, who are the most sedentary. When we talk about disease-modifying therapy, we’re targeting those people who have disease activity on MRI. We need to have a targeted approach for people who struggle the most to be physically active.

 and the Consortium of Multiple Sclerosis Centers is multidisciplinary care. How do you see research and care working together to improve lives of people with MS?

The physical activity recommendations are an excellent start toward promoting that multidisciplinary piece in terms of early referral to an exercise specialist, and I think the research is really about developing the pathway and the product to do that cost-effectively. That is a multidisciplinary ambition.

We can do a better job at showing that this is cost-effective in the longer term by collecting long-term, real-world data. Although we didn’t look at health outcomes specifically—we didn’t look at survival or disability levels—we have the infrastructure that we could expand on that and look at that, and I think others could as well.

: How did you get involved in MS research?

Well, I got interested in MS by meeting people with lived experience as a medical student volunteering for MS Canada, and I got involved in MS research early in my residency training. I had an opportunity to go to a conference where Dr [V.] Wee Yong and Amit Bar-Or were cochairing this conference, and I was really inspired by how much there was to still understand about MS and by their passion for the work that they did. That really was instrumental in getting me going, both working with people with lived experience early in my career and then having some really wonderful role models to bring me along into the field early on.

: Has your focus always been physical activity?

I was initially interested in mobility, so I started off doing some work in gait in MS, and I’ve done some work in health-related quality of life. But yes, then I got more and more focused on the physical activity piece.

: Do you have any opinion about artificial intelligence (AI)? Was there any AI used in your paper?

There was not any AI used in my paper, but I asked AI about the use of AI in research and clinical care, and it was quite biased toward how useful it could be. Just reflecting on my own answer to that question—not what AI told me—I think AI will be useful for allowing faster synthesis of research findings for reviews and so on, and that will help us hopefully close the research-to-practice gap faster. I actually think that human error is still a big problem in everything that we do, and so I guess I’m a little hopeful that AI will be able to help with that human error piece. I do use it every day now to ask questions where I can get quick answers that I used to Google—not even so much for my professional life but in my personal life. You know, “Who won the Jays game last night?”

: Anything else you would add about your paper and the future direction of this research?

The other thing that I would like to add is that in terms of future directions, I don’t think we need more clinical trials about physical activity in MS. We know physical activity improves function, and it improves symptoms if done at the right dose. We know that it’s beneficial, and we know that all types of physical activity are beneficial. It’s really about which activity a person will do.

We need to spend our resources on that implementation piece. How do we implement physical activity support within our health care systems and within our communities, rather than another randomized clinical trial on physical activity in MS? Those are expensive and costly, and we already know that physical activity is beneficial—the return on the investment is greater to target the people who are sedentary and insufficiently active than it is to try to take people who are already interested in changing their behavior and put them in a research trial.

: In MS, it seems like one of the big themes of the day is that the earlier we intervene, the better, whether it’s with DMT, physical activity, rehabilitation, or prehabilitation. Would you say that we don’t need to prove that as well?

In terms of cost-effectiveness research, I think the early intervention is something that is important. My hypothesis would be it’s probably a lot like smoking, where it’s never too late to quit, it’s never too late to start. I don’t think that we need trials to look at the early intervention, but I think we could look at real-world cost savings. What happens when you implement a program or a service early over the course of the next 15 years compared with the 15 years prior, where you didn’t have an early intervention product?

IJMSC Author Spotlight shines a light on the people behind the research.

IJMSC Author Spotlight: Katherine Knox, MD, FRCPC

Despite unequivocal evidence for the benefits of regular physical activity (PA), many people with multiple sclerosis (MS) and their family caregivers find it challenging to fully participate to the same extent as the general population. Achieving full participation in PA requires addressing both quantity and quality of participation. Although elements fostering quality participation (QP) in people with disabilities are increasingly recognized, our knowledge of how QP is experienced and fostered in dyadic PA interventions targeting MS dyads is limited. Therefore, we aimed to explore QP experiences of MS dyads during a 12-week, group-based, dyadic, behavioral PA intervention to inform future efforts to optimize full participation in PA in these groups.

We conducted semistructured interviews with 6 participants who completed the dyadic intervention. Data were inductively analyzed using thematic analysis and deductively mapped to the Quality Parasport Participation Framework.

We identified 6 themes mapped to the 6 building blocks (autonomy, belonging, challenge, engagement, mastery, and meaning) of quality participation that provide insights into how people with MS and their caregivers experienced QP in the intervention. Additionally, various intervention characteristics that fostered QP experiences were identified, including the dyadic approach, program duration, financial incentivization, individualized tailoring of program components, group composition and dynamics, facilitator knowledge and expertise related to MS and caregiving, and the opportunity for participants to apply the knowledge gained in the group sessions.

Our findings outline QP considerations for researchers and interventionists designing dyadic PA programs in MS, offering insights that can inform the development of such programs to support full participation for both people with MS and their caregivers.

From the School of Rehabilitation Therapy (AF, ML, MLF), the Faculty of Health Sciences (MK, EB), and the School of Kinesiology and Health Studies (AL-C), Queen’s University, Kingston, ON, Canada; Providence Care Hospital, Kingston, Canada (AF); the Interdisciplinary School of Health Sciences (KC, LAP), the Faculty of Medicine (MF), and the Brain and Mind Research Institute (LAP), University of Ottawa, Ottawa, Canada; the Ottawa Hospital Research Institute, Ottawa, Canada (MF). 

Afolasade Fakolade, Assistant Professor, School of Rehabilitation Therapy, Louise D. Acton Building, 31 George Street, Queen’s University, Kingston, Ontario, Canada. K7L 3N6; 

The authors thank Odessa McKenna, Julia Ludgate, Taylor Hume, Myriam Venasse, and Siona Phadke for their contributions to the intervention development and delivery, project management, and coding of interview data.

This work was supported through a Consortium of Multiple Sclerosis Centers pilot grant (to Fakolade, Finlayson, Freedman, and Pilutti). The statements in this work are solely the responsibility of the authors and do not necessarily reflect the position, ideas, or opinions of the Consortium of Multiple Sclerosis Centers.

 Findings from this manuscript were presented at the Annual Meeting of the Consortium of Multiple Sclerosis Centers in Nashville, Tennessee, May 2024. 

. 2024;26(S1). doi:10.7224/1537-2073-26.s1.1

 The authors declare no relevant conflicts of interest.

Many people with multiple sclerosis (MS) and their family caregivers experience challenges with managing the disease and require support for their individual and collective well-being.

 A behavioral approach to promote well-being in families affected by chronic diseases, such as MS, is physical activity (PA).

 Regular PA may have disease-modifying effects and is a critical component of comprehensive MS management.

 find it challenging to fully participate in PA to the same extent as the general population. Qualitative study results show that people with MS and their caregivers perceive PA as an interdependent experience

 and report many psychological, physical, and social barriers to full participation.

 These findings underscore the importance of dyadic behavioral PA approaches (ie, supporting the pursuit of PA goals and coparticipation of 2 individuals in a socially significant relationship, such as care recipients and their caregivers

When promoting full participation in PA, 2 dimensions are crucial: quantity (frequency and intensity)

 and quality (a feeling state derived when participation experiences are satisfying values and needs). Six experiential elements or building blocks of quality participation (QP) have been identified, including autonomy (having choice and control), belonging (feeling included, part of the group), challenge (feeling appropriately tested), engagement (feeling focused and absorbed), mastery (experiencing success), and meaning (working toward a personal or socially meaningful goal and feeling a sense of responsibility to others).

 The Quality Parasport Participation Framework (QPPF)

 further outlines key considerations and 25 actionable strategies for fostering QP in sports programs for people with physical disabilities. The strategies are arranged within the physical, social, and activity environments, where conditions for quality experiences can be shaped. Extending the QPPF to community-based 

 recently developed a strategy matrix with 85 strategies for enabling QP in community-based exercise for people with disabilities. Identifying these strategies has been critical in applying the concept of QP in several contexts and across many disability groups.

 However, it is important to note that existing work focuses solely on individuals with disabilities, not on dyads where 1 partner does not have a disability.

In dyadic chronic disease management literature, including dyadic PA programming, there continues to be a strong focus on increasing PA levels (quantity),

 with limited attention to understanding QP experiences. A dyadic approach to PA may inherently address QP, for example, when dyads support each other (belonging) to achieve individual and shared meaningful PA goals (meaning).

 Dyads with quality PA experiences may also report improved subjective well-being and sustained or increased PA over time.

 Thus, it is crucial to consider QP in the context of dyadic PA interventions.

Importantly, insights into QP and strategies for fostering quality experiences may be gleaned from theories of human-motivated behavior, eg, Self-Determination Theory.

 However, accessing and interpreting theoretical literature may be challenging for clinicians.

 addresses this challenge by conceptualizing QP experiences and offering actionable, evidence-informed strategies for clinicians to create quality PA experiences. To date, no studies have applied the QPPF in the context of dyadic PA programming in MS. This study takes a crucial first step in exploring QP experiences of MS dyads and will inform future efforts to optimize full participation in PA. Specifically, using the QPPF,

 we explored whether people with MS and their caregivers who completed a 12-week, group-based, dyadic, behavioral PA intervention called Physical Activity Together for MS (PAT-MS)

 perceived it as a quality intervention and experienced QP during the intervention.

PAT-MS prioritizes PA goal pursuit and supports coparticipation among people with MS who have moderate to severe disability and their caregivers.

 Recently tested in a pilot feasibility trial,

 PAT-MS integrates theoretically grounded strategies for developing PA self-regulatory skills (eg, goal setting, problem-solving). This manualized intervention consists of 6 modules with associated practice sheets, delivered biweekly via Zoom videoconferencing (Zoom Communications, Inc) by a trained interventionist over 12 weeks. People with MS and their caregivers also received one-on-one calls with the interventionist to supplement and troubleshoot in the weeks when the group sessions did not occur. The study protocol

 details the week-by-week intervention content. In the trial, a demographic questionnaire was completed at baseline and the Measure of Experiential Aspects of Participation (MeEAP)

 assessed QP elements (autonomy, belonging, challenge engagement, mastery, meaning) post intervention. The MeEAP is a 12-item scale, with 2 items per element, rated using a 7-point scale from 1 

. Each item is added for a maximum score of 84 points. It is important to note that the pilot trial was not powered based on this outcome measure, as the focus was not on determining change in QP, but rather experiences of QP. Questionnaires were completed via a university-licensed SurveyMonkey account. Ethics approval was granted by the Ottawa Hospital Research Ethics Board (20190329-01H) and the University of Ottawa Research Ethics Board (H-09-19-4886).

This study is framed within ontological relativism and epistemological subjectivism, assuming the existence of multiple, subjective, mind- and context-dependent realities. We also believe that knowledge is coconstructed through intricate interactions among researchers, participants, and the broader sociocultural environment.

 Grounded in this perspective, we sought to gather rich accounts of QP experiences from the perspective of a small group of people with MS and their caregivers.

Participants (N = 10) who completed the intervention condition of the pilot trial

 between April 2021 and February 2022 were eligible and invited to participate in the current study. Six participants agreed and completed the interviews. Further information on eligibility criteria is available in the study protocol,

 with COVID-19–related modifications reported in the feasibility manuscript.

We utilized a qualitative interpretative methodology through individual semistructured interviews. Participants confirmed verbal consent before each interview. Using an interview guide, the second author (M.L.) conducted the interviews via Zoom. Interview questions captured reasons for participating in PAT-MS, relationships developed during PAT-MS, and experiences and outcomes of participating in PAT-MS. People with MS and their caregivers were interviewed separately. Interviews lasted 45 to 60 minutes and were audio-recorded and professionally transcribed for analysis.

Descriptive statistics (median, range, frequency) were computed for the sample and MeEAP

 scores. Qualitative data were analyzed using reflexive thematic analysis,

 a theoretically flexible approach that aligns with our worldview. In the first phase, 4 authors (A.F., M.K., K.C., and E.B.) independently read and reread each transcript, noting points relevant to the research aim.

 In the second phase, 3 authors (A.F., M.K., and E.B.) systematically generated codes to identify key features and points of interest. NVivo version 12 (QSR International Pty Ltd) was used to facilitate coding and data organization. One author (K.C.) acted as a “critical friend,” challenging initial codes, contributing to new codes, and stimulating reflection on alternative perspectives.

In the third phase, we used an inductive approach to organize codes into possible themes that indicated participants’ experiences. In the fourth phase, a deductive approach was applied to map potential themes to the QPPF.

 For instance, theme 6 (accountability to one another) is conceptually akin to “belonging” (feeling included, part of the group) in the QPPF.

 The fifth phase involved ongoing discussion among the authors to clarify each theme's scope, boundary, and alignment with research objectives. Finally, a coherent written report was created, incorporating exemplar quotations to enhance understanding of the themes.

Contemporary qualitative research methodologists have critiqued member checking as a universal method of establishing rigor in qualitative research.

 Instead, they urge researchers not to consider criteria for ensuring methodological rigor as universal or concrete but to draw from a dynamic list of relevant traits from different sources

 while remaining flexible and not bound by said techniques.

 With these considerations in mind and consistent with our philosophical worldview, we ultimately chose 4 criteria for rigor: resonance, plausibility, ethical conduct, and reflexivity. 

 was ensured by offering “thick” descriptions and interpretations, enhancing transferability to different situations (naturalistic generalizability).

 We used direct quotations from participants to allow readers to independently assess our interpretations and the appropriateness of our themes. Quotations from all 6 participants were given equal attention in the coding process, and themes were developed from robust, supportive quotations from all participants rather than a couple of unconvincing examples.

 was maintained through informed consent and participant anonymity. We sought 

 by situating our findings within the QPPF.

 was ensured by using a “critical friend” to stimulate reflection and explore alternative explanations and interpretations.

 These strategies are consistent with reflexive thematic analysis

 and contemporary approaches for rigor in qualitative research.

To maintain the anonymity of the small sample of participants, the decision was made to remove all identifiable information, replace names with pseudonyms, and withhold a table containing demographic information. Participants in this study included 3 people with MS (2 women and 1 man) and 3 caregivers (2 men and 1 woman). These participants represent 2 paired partners (n = 4), 1 unpaired person with MS, and 1 unpaired caregiver. The median age of participants was 51.5 (range, ± 21) years old. The median MeEAP

 score was 61.5 (range, ± 17.0), with the highest scores on the autonomy and mastery (both at 6.0), followed by challenge, engagement, and meaning (all at 5.3) subscales. The lowest score was on the belonging subscale (4.8).

We identified 6 interrelated themes conceptually aligned with QP elements/building blocks in the QPPF,

 conditions necessary to achieve these elements in the strategy matrix,

 and an additional theme related to further refinement of PAT-MS. Although we found a high degree of interaction between QP elements, for ease of representation, themes are illustrated as separate entities here and the relationships between themes are subsequently explored in the discussion. The themes are discussed below, with exemplar quotations included for more context. Quotations are referenced by participant pseudonyms.

Theme 1: Choice and Control Over Type and Level of PA Participation: Any Movement Is Good Movement 

Participants described how PAT-MS provided them with a sense of choice and control over their PA participation (autonomy), which was reflected in being able to set individual and shared PA goals with their partners in collaboration with the interventionist. “It is a program that helps you throughout each week to kind of identify an activity of interest and then maintain that activity post program…and so, it becomes almost muscle memory,” Luke, a caregiver, said. Participants valued that PAT-MS emphasized the notion that “any movement is good,” and it helped them to redefine possible options for PA (eg, the inclusion of household chores) and offered flexibility to choose specific activities based on their interests. Jill, a person with MS, remarked: “She [interventionist] explained what defines an activity, and in our mind, an activity would be something where we were working out in the gym, but she included other choices and things around the house like doing housework or chores. So it helped us understand a little bit better [and] to maximize our participation.”

With the expansion in their knowledge of what constitutes PA, participants were able to make decisions relative to how they would incorporate familiar, valued activities into their daily routine and explore new options that they could continue beyond the intervention context. This decision-making regarding the frequency, intensity, and type of activity was perceived as necessary for a sense of personal agency and independence: “And now [I have] a better understanding… because before I would say, ‘How come I get so tired if I didn't do anything?’ But doing laundry, doing this, doing that, it all counts as physical activity, so you understand more about physical activity and can prioritize and schedule and understand where does your fatigue come from,” Barb, a person with MS, said.

Theme 2: Meeting and Exceeding Expectations: A Sense of Accomplishment 

Participants shared that they experienced a sense of accomplishment when they observed incremental improvement in their skills and abilities and increased competence for PA (mastery) during the intervention period. “For us, we set out with very low ambitions of going to the pool twice a week, and I think it was really meaningful when, all of a sudden, she was able to do the third and fourth time per week. So, in short order, we doubled our expectations of what I thought and what she thought she was capable of doing,” Luke shared. They also described mastery experiences relative to their perceived improvements in outcomes, including physical fitness and psychological well-being. Barb commented, “I am in better physical shape than I was 4 months ago.” Matt, a caregiver, said, “You do feel more positive because you're up and active and just not sitting sedentary all day; you feel happier.”

Participants appreciated the weekly PA log in the PAT-MS manual, which was used to record and self-monitor progress and improvement during the intervention. Jill added, “To visualize what we have accomplished, what our goals are in the PA log, so this gave me a great opportunity to work with a spreadsheet and, looking back on week 1 and week 2, to see how much I actually [did].”

Theme 3: Incremental Grading of Activity: A Balancing Act

Participants reflected on the importance of activities that physically challenged them to develop skills and personal competence for PA, progressively difficult tasks that pushed them beyond their comfort zone (challenge) while not generating frustration or failure. To facilitate a sense of physical challenge, participants used the average daily number of minutes, perceived level of intensity, and feeling after PA, which were recorded in the weekly PA log to make necessary adjustments to their activities. Mary, a caregiver, said, “Those are real milestones. So, you're pushing yourself, but you are being pushed by the study, too. I think what the program has spelled out to us as participants is that we can push ourselves. We can work with our partners to help them push themselves too.” Tailored support to participants’ abilities was considered essential to guide activity progression. Barb commented, “It really does depend on the abilities and levels of the participants. There are times [when] you know you have participants [who] require additional support or [something] extra—someone [who is] able to guide them a little bit more.”

Theme 4: Engagement in a Health-Promoting Activity Can Be Fun and Enjoyable

Participants found the intervention sessions and activities fun and enjoyable (engagement) and emphasized how the dyadic and group-based approach and the opportunity to select their partner for coparticipation supported their continued engagement in the intervention. Barb said, “[It was] a little push in doing exercise, especially with my sister; I thought it was fun.” The resources and tools embedded in PAT-MS also promoted engagement: Matt shared, “Little sticky notes that you see first thing in the morning, I found that kind of fun. You hit the floor, and then you're like, ‘Oh, yeah, exercise.’” The interventionist's flexibility with scheduling the sessions and her group facilitation skills also contributed to perceptions of engagement. “[When] my sister and I work[ed] together, we rambled, so she [the interventionist] was very good at reining it in a little and getting to what we need[ed] without saying ‘Come on guys; wrap it up.’ I thought she was good at keeping us engaged,” Barb contributed. Participants also shared the importance of financial incentives, particularly for continued involvement in a program spanning several weeks. Jill said, “…A little bit of financial incentive can come in handy, especially with life being quite expensive…so it's nice to see that at least there is a little something for those who can benefit from it.”

Theme 5: Contributing to a Meaningful Goal: Helping Self and Others 

Participation in PAT-MS held personal and social significance (meaning) for participants, who emphasized choosing to participate for the health benefits of PA. Austin, a person with MS, said, “It's all those things [symptoms of the disease] that wear you out, that put you on the sofa with the remote control. It's a debilitating illness, and it wears out the afflicted and the partners as well; it's tiresome.” Moreover, after COVID-19–related social and physical isolation measures, participation in PAT-MS was perceived as a catalyst to resume their engagement in activities. Matt commented, “After 2 years of COVID lockdown, I think the idea of something that helped motivate me to get in shape was going to be a good thing.” Jill shared how participation in PAT-MS helped her get out more and reduced feelings of being homebound: “It was…quite difficult for me to motivate myself. Sometimes I don't even leave the apartment, which isn't…necessarily a healthy thing, I guess, to stay cooped up all day…. When I do it [exercise], I feel a lot better…and that was similar…across the board, you know, from doing the program.”

Other participants chose to participate in PAT-MS for altruistic reasons, believing it allowed them to contribute to a socially meaningful goal. They valued the opportunity to contribute to promoting the well-being of others by sharing knowledge and experiences related to symptom management and reflections on the benefits of PA. Barb said, “I always like to participate in research that's going to help move management of the condition [MS] forward. Anything that's going to help the next cohort of people coming through Someone did it before me, so now it's my turn to do it for someone else.”

Theme 6: Doing Together: A Sense of Camaraderie and Accountability to One Another 

Despite remote delivery, participants built and strengthened personal relationships with partners and group members (belonging), offering and receiving encouragement and peer and familial support. Several participants shared how participation in PAT-MS improved the relationship quality and dynamic with their partners. Austin said, “We are now doing new things. We've been married for 25 or 27 years, and we are doing new things together. That's not a bad position to be [in]. We are active, and we are doing [it] together, which is not insignificant.” Luke offered this reflection, “[Learning] how to interact with my partner better is probably the biggest outcome. Because we've not had any…escalated arguments, I would say. [And] with regard to activity,…it's just about, you know, moving and being active as a human being.”

To promote belonging, participants emphasized the importance of having good group dynamics for in-depth relationships and comfort in sharing. Barb commented, “I realized that other people in the group have the exact same fears or concerns that I do. It's helpful working with other people with similar experiences because you can all share what you are going through, and you realize you are not the only one, which is quite often the case. Then there's kind of like a breath of fresh air…there's some camaraderie there.”

Open communication among group members while respecting personal boundaries contributed to a sense of belongingness and psychological safety. “Everybody was very friendly and open; everybody respected each other when we were discussing. I mean, maybe in the past, this would have been a group that met up in person, but we all met virtually.… Everybody was able to communicate with each other well. I think we knew that we were going to respect each other's privacy, so people were able to share a little bit more,” Luke commented. Participants also shared that they would like opportunities to socialize with other group members beyond the program delivery.

Theme 7: Improving PAT-MS Features and Delivery

While all participants were supportive and appreciative of PAT-MS, they also commented on some features that could be improved in future iterations. For instance, some participants reflected on how disease fluctuations, the unpredictability of MS symptoms, or increasing caregiving responsibilities could affect the ability of people with MS and caregivers to commit to weekly calls spanning 12 weeks, and suggested reducing the frequency of these calls in future interventions. Austin remarked, “For the ones with the activity coach [interventionist] and the ones where we met in the group, I would say fewer calls.” A second area of concern was the requirement to simultaneously access the online PAT-MS manual and contribute during the Zoom videoconferencing group sessions. Barb noted, “I think the only part I didn't like was the guide [PAT-MS manual] being online.… I know there [are] ways you can open the guide and do Zoom at the same time, but I'm not the person [who can] figure stuff out like that…I'm not savvy when it [comes] to tech.” Another participant raised the issue of group composition and the importance of considering homogeneity in composition (eg, including those with similar disability levels and shared understanding of caregiving) in future iterations. Jill reflected, “I guess one negative [component] I felt was—this is a minor thing for me—but there were different ability levels in the group. I think in an ideal world, maybe the disability levels might have been paired a little more precisely, but maybe that was an objective…as well, to have different levels.”

Full PA participation necessitates attention to both quantity and quality,

 yet most dyadic PA studies have predominantly focused on quantity, neglecting the exploration of positive, satisfying, enjoyable experiences that generate personally valued outcomes (ie, quality).

 We addressed this gap by exploring the QP experiences of people with MS and their caregivers in a dyadic PA intervention. Below, we highlight key findings and discuss their implications for rehabilitation providers.

While individual quality elements were presented in the results, our analysis suggests potential interrelationships among them.

 For instance, autonomy was described as the ability to set meaningful, enjoyable PA goals and exert control over engagement levels. Participants further reported “pushing themselves” beyond their comfort zones (challenge) to achieve personalized and shared PA goals and feeling a sense of accomplishment and increased confidence (mastery) when achieving or surpassing initial goals. Achieving the goals empowered them to become self-sufficient in pursuing a physically active lifestyle, leading to improvements in health and well-being (meaning). Qualitative research in other chronic diseases supports the importance of choice and control over the type of activity and level of engagement for long-term PA.

Belonging received the lowest MeEAP score, possibly due to a lack of avenues for participants to connect outside the intervention, which is a key strategy for fostering this element.

 Nevertheless, the social bonds formed and/or strengthened with partners and peers during PAT-MS appeared linked to engagement. Previous research exploring PA programming, including technology-supported interventions, has reported that fostering a sense of community and camaraderie among participants with shared values can contribute to quality experiences and improve program adherence.

 Given the isolating nature of MS for affected families,

 the opportunity for participants, especially caregivers, to build new relationships during PAT-MS has implications for reducing social isolation.

Our findings suggest that remotely delivered PA interventions can foster QP experiences by tailoring the intervention to participants’ contexts and values. Remote PA programs via videoconferencing platforms (eg, Zoom) are gaining traction post COVID-19, offering increased opportunities for people with disabilities and their caregivers to be physically active.

 However, trials evaluating technology-delivered PA interventions, including those for people with MS, often overlook QP considerations.

 While the QPPF highlights 3 environments for shaping QP experiences,

 we identified conditions within the activity (nature of PAT-MS) and social (relationships formed during PAT-MS) environments with no corresponding descriptions in the physical environment. The videoconference delivery of PAT-MS may have reduced the potential to identify conditions within the physical environment that were influencing QP experiences. Participants reported challenges regarding navigating the online PAT-MS manual while simultaneously participating in Zoom videoconferencing sessions. This finding suggests that further refinement of the technology platform may be necessary to improve the capacity to access the intervention remotely. This is a key consideration for future iterations of PAT-MS, as compliance with technology-mediated rehabilitation and positive intervention outcomes can be influenced by participants’ perceptions of the technology.

 It is also possible that people who participate in technology-mediated PA interventions may experience QP differently from those who receive in-person interventions. Given concerns about the group composition and frequency of PAT-MS intervention sessions, moving forward, it may be worthwhile to test how different delivery settings, dose, frequency, and intensity of PA interventions influence QP experiences and outcomes; this would facilitate the incorporation of meaningful participation-enhancing PA interventions into routine clinical practice.

As this study was embedded in a pilot feasibility trial,

 our main focus was to explore participants’ experiences to inform future intervention refinement. While not explicitly testing relationships among QP elements, our findings suggest that a proximal element (eg, challenge) may bring about the experience of a more distal (eg, meaning) element.

 While the strategies for fostering QP in this study align with the recent strategy matrix,

 suggesting potential generalizability to other contexts, the importance of novel strategies was also identified. For instance, opportunities for coparticipation with a self-selected partner and training to improve the technical expertise of participants to align with the delivery modality may be strategies to foster engagement. Future researchers may want to further test the QPPF

 in technology-delivered dyadic intervention contexts to identify the strongest predictors or most important elements and strategies to include in such interventions.

Recognizing that QP is individually and subjectively experienced and context specific,

 future research could also explore the QP experiences of interventionists in dyadic PA interventions. Jackson et al

 reported that service providers (akin to interventionists) in a community-based PA program for persons with disabilities also experienced meaning, feeling a sense of responsibility and seeing a positive program impact on participants’ lives. Investigating whether interventionists experience all 6 QP elements, if those experiencing QP are more likely to foster the same among participants, and differences and interactions between interventionists’ and participants’ experiences could advance the field of dyadic PA.

Findings from this study offer some pearls for rehabilitation providers when designing and delivering PA programming for people with MS and their caregivers. Importantly, activities perceived as meaningful, enjoyable, and tailored to individual needs of the dyad must be prioritized when designing PA programming. Our findings indicate that it is possible for MS caregivers to also experience QP, and their needs and preferences should also be assessed and incorporated. Creating avenues for open communication about PA goals; education about how to be active and different ways to adapt activities, particularly for individuals with moderate-to-severe MS disability; and encouragement of progress tracking so that the dyad can see the gains they have made are some strategies that can be applied in clinical practice to foster repeated and continuous quality experiences in PA.

Having said this, providers must resist a narrow focus on elements of the activity alone (eg, frequency, type, intensity), as our findings indicate that participation is more than being involved in an activity. Indeed, various characteristics within the social environment can contribute to fostering QP experiences. For instance, health care providers and exercise professionals may want to pay attention to providing opportunities and support for people with MS to meaningfully coparticipate in PA alongside a self-selected partner.

Our sample size is admittedly small, although similar to previous qualitative research exploring experiences of PA programming in MS

 and caregiver experiences participating in a technology-supported intervention in Alzheimer disease.

 Statistical generalizability is not a relevant criterion for evaluating qualitative studies.

 Nevertheless, it is important to address the likely impact of sample selection on this study's findings. Specifically, the sample included participants who volunteered for this interview component post intervention. It is possible that our findings may not represent the opinions and experiences of the pilot trial participants who chose not to take part in the postintervention interviews. Further, while the demographic profile of our participants is consistent with the full sample in the pilot feasibility trial (median age, 51.5 for people with MS and 51.0 years for caregivers

), it is possible that younger or older people with MS and family caregivers have unique QP experiences during PA, an interesting avenue for future intervention development work.

Second, it is worth noting that conceptualizations of QP

 have focused on self-described quality experiences, with less attention to objective 

 of movements during PA. Given that low-quality movement patterns can increase the risk of injury during PA among apparently healthy adults and athletes,

 future MS researchers may want to explore how perceptions of quality experiences intersect with 

 of movement patterns to examine comprehensive PA participation.

Third, we note that MS dyads tend to view PA as an interdependent experience, with both individuals experiencing similar struggles, frustrations, and challenges as they attempt to enact a physically active lifestyle.

 With these considerations in mind, both partners were considered together in the data analysis in the pilot feasibility trial,

 a practice followed in the current study. Nevertheless, we acknowledge that this approach may have obfuscated the distinct perceptions of QP—in particular, quality elements may not be experienced in the same manner for both people coping with a chronic disabling condition, such as MS, and their family caregivers who do not have a disability. Existing QP work in the field of PA promotion focuses solely on individuals with disabilities.

 Thus, characterizing and identifying how to support the QP experiences of family caregivers who do not have a disability should be explored in future PA research.

Finally, PAT-MS was delivered during the COVID-19 pandemic, potentially positively influencing participants’ perception due to the significant reductions in PA levels in the MS population

 during this period. In addition, the involvement of a single interventionist in PAT-MS may have influenced participants’ experiences of the program, which should be tested with different program leaders moving forward.

This study advances our understanding of the experiential dimensions of quality PA participation in a dyadic context in MS, reinforcing the potential effectiveness of PAT-MS in this population. Our findings highlight the intricate interplay among autonomy, belonging, challenge, engagement, meaning, and mastery, offering a foundation necessary for designing and implementing future dyadic PA programs that support full participation for people with MS and their caregivers.

Physical Activity Together for MS: Quality Participation Experiences of People With Multiple Sclerosis and Their Caregivers in a Dyadic Physical Activity Intervention

For individuals with multiple sclerosis (MS), treatment interruption can result in relapse/recurrence of the disease activity. Currently, there are no consensus guidelines about whether an abrupt stop with a short washout period or gradual tapering is better for fingolimod (Gilenya) cessation. We investigated the impact of the fingolimod discontinuation strategy on the recurrence of disease activity and the rebound occurrence of symptoms during washout.

Krupa Pandey, MD

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