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Characterizing Long-term Disability Progression and Employment in NARCOMS Registry Participants with Multiple Sclerosis Taking Dimethyl Fumarate

Multiple sclerosis (MS) encompasses various symptoms, including fatigue, pain, spasticity, motor dysfunction, postural instability, sexual and bladder dysfunction, and cognitive impairment. Despite the documented benefits of exercise for alleviating MS symptoms, adherence to physical activity guidelines often is low, resulting in sedentary lifestyles among people with MS. This qualitative study explores the experiences of individuals with MS who participated in a ballroom dance intervention.

Thirteen community-dwelling individuals with MS participated in five 1-hour focus group sessions as part of a larger ballroom dance study. The Framework Method, utilizing NVivo qualitative analysis software, was applied to verbatim transcripts.

Four themes emerged. (1) Physical and psychological benefits: Ballroom dance improved perceived symptoms, including strength, endurance, coordination, and balance, as well as reduced fatigue and alleviated depression. (2) Positive social support leading to enjoyment/fun: Ballroom dance fostered positive support and served as an enjoyable activity, including for couples. (3) Improved confidence: The dance intervention instilled confidence in physical abilities and emotional well-being. (4) Physical and social facilitation of activity: Ballroom dancing facilitated activity because partners were able to assist when fatigue or balance issues occurred, and the intervention provided social acceptability.

Recreational ballroom or social dance was well tolerated, and individuals with MS and researchers perceived it as beneficial as it led to positive physical and psychological changes. This partnered social dance intervention provided an emotionally and physically supportive environment, improved confidence, and facilitated activity. This study contributes to the understanding of the potential of recreational ballroom dancing to promote physical activity and well-being among people who are living with MS.

From the College of Nursing, Marquette University, Milwaukee, WI (LBP); Health Equity Research, Department of Research, Patient Care Services, Stanford Healthcare; and Division of Primary Care and Population Health, Department of Medicine, Stanford University School of Medicine, Palo Alto, CA (AFY); and Program in Exercise Science, Marquette University, Milwaukee, WI (AVN). 

Alexander V. Ng, PhD, Program in Exercise Science, PO Box 1881, Milwaukee, WI, 53201; 

 We thank Danceworks MKE for providing excellent dance instruction tailored for people with MS and to ProHealth Care for providing physical space for us to meet.

 All authors declare no relevant conflicts of interest.

 Funding for this research came from the Greater Milwaukee Foundation.

 Two posters have been presented based on this work. Recreational Ballroom Dance and Multiple Sclerosis was a poster at the American College of Sports Medicine Annual Meeting; May 2019; Orlando, FL. Recreational Ballroom Dance and Multiple Sclerosis: Date Night Fun was presented at the 43rd Annual Midwest Nursing Research Society Conference; March 2019; Kansas City, MO.

Multiple sclerosis (MS) is a progressive central nervous system disease of autoimmune origin.

 Symptoms of MS include fatigue, pain, spasticity, motor dysfunctions, postural instability, sexual and bladder dysfunctions, as well as cognitive impairments and depression.

 With the broad range of symptoms and unpredictability of disease progression, it is important to maximize the independence and physical functioning of people with MS.

Because physical activity and exercise decrease symptoms and improve ambulation, general health, and quality of life (QOL) in people with MS,

 evidence-based exercise or physical activity guidelines for people with MS have been developed.

 Despite the benefits, adherence to physical activity recommendations often is low and many people with MS live a sedentary life.

 Barriers to exercise in this population include disease symptomatology, such as fatigue, pain, and depression; functional disability; social reactions to disability; and lack of accessibility to health or fitness facilities.

 The benefits of exercise programs in this population, as well as the barriers to adherence, necessitate development of engaging and innovative programs to promote physical exercise that are accessible to people with MS.

Dance programs can be enjoyable and engaging as an alternative to traditional exercise programs and may encourage participation in a physical and social activity.

 Studies of people with Parkinson disease and other neurological diseases have found dance to have physical, emotional, and social benefits.

 Data show that physical activity, cognitive stimulation, and music may improve cognition, but these effects could be interactive when combined as dance, which provides all 3 simultaneously.

 Most of the previous studies used partnered dance (eg, Argentine tango, American ballroom, or folk styles), although nonpartnered dance (eg, modern or rhythmic movement) has also been studied.

Although comparatively well-studied in people with Parkinson disease, dance has only recently been investigated in people with MS, as highlighted in a recent systematic review.

 A previous study with a person with MS demonstrated improvements in physical and emotional function after a rhythmic dance intervention.

 Subsequent studies reported improved function in people with MS after nonpartnered dance interventions.

 Recent studies suggest that partnered social dance is a promising and enjoyable way to improve physical and cognitive abilities in those with MS.

 In the first partnered dance intervention in people with MS, a small study without a control group, Mandelbaum et al

 noted improvements in physical function and activity, and participants reported that the intervention was enjoyable. Another small study reported on a ballroom/social dance intervention for people with MS in comparison with a control group of people with MS; the intervention demonstrated improvements in physical function, cognition, and quality of life and a trend toward decreased fatigue and depression.

 This study also documented that dance can help meet exercise or physical activity guidelines for exercise intensity.

The observed success of dance programs in degenerative neurological conditions is noted, yet the literature is sparse, mainly quantitative, and focused on physical symptoms. The literature is lacking evidence from the perspective of people with MS who participate in such programs. Because people with MS have symptoms affecting the psychological and social realms and because dance interventions have the potential to provide feelings of enjoyment and accomplishment as well as social engagement, dance research can include elements beyond physical functioning. Accordingly, using qualitative methods, the current study's objective was to understand the experience of people with MS who participated in a ballroom dance intervention.

This descriptive, qualitative study employed focus groups to examine the experiences of people with MS who participated in a recreational ballroom dance intervention.

 The focus group methodology was chosen to understand the phenomenon from participants’ perspectives and to allow them to interact and collectively recall their experiences in the ballroom dance program.

Participants in the dance intervention were recruited from the community or through the local chapter of the National Multiple Sclerosis Society. Dance sessions were held in 1 academic and 1 community setting from 2014 to 2015. The dance program was developed by the research team of our larger study

 and was similar to that previously reported.

 Focus group participants were chosen from those who took part in the study. See 

Briefly, dance sessions were led by professional dance instructors who were trained by the research team to have a working knowledge of MS, and who, likewise, shared their artistic and pedagogical knowledge and experience with the research team. Sessions consisted of a warm-up followed by 45 minutes of dance steps (ie, salsa, rumba, foxtrot, swing, waltz, American tango, or push-pull) and a cool-down. Dances were individualized, with some participants performing smaller steps or dancing in half time. Instructors provided appropriate recorded music. Everyone participated with a partner, either one they brought or volunteers from the research team. At the conclusion of the intervention, people with MS who had attended at least 8 of the 10 weeks of dance sessions were invited to participate in 1 of several focus groups.

) with open-ended questions was used to elicit participants’ perceptions of the program. The questions were from an exercise/physical activity perspective, focusing on participants’ experiences and their overall perceptions of exercising with MS. Five 1-hour focus-group sessions with 2 to 3 participants per group were conducted 1 to 2 weeks after completing the program sessions. An author (LBP) moderated the focus group sessions, and a second author (AVN) took notes. Focus group sessions were conducted in private conference rooms in the same locations as the dance program and were audio-recorded to ensure accuracy.

The research protocol was reviewed and approved by the Marquette University Institutional Review Board before study commencement. Participants provided written informed consent prior to focus group sessions and received a $10 gift card for compensation after participation.

Audio recordings were transcribed verbatim, and accuracy was verified by an author (AVN). All authors independently reviewed and analyzed the transcriptions and coded similar statements and phrases. Qualitative analyses were conducted using computer-assisted coding and memo software NVivo (version 11, QSR International). Qualitative data analysis procedures were based on the framework analysis methodology by Krueger and Casey.

 The analysis was an iterative process involving constant comparison.

 Analysis started with labeling or coding transcript data to reflect as many of the nuances in the data as possible, rather than reducing them to a few numerical codes. As the analysis continued, codes were grouped to form categories. This process allowed researchers to sort and arrange the data to build themes and conceptual explanations. During the coding process, the entire research team met several times over a period of months to discuss the data and reflect on recurrent themes. Data collection continued until data saturation was reached, which was defined as no new themes emerging from focus groups.

 The coding process continued until all focus groups had been completed and reviewed. This process ensured internal quality control and helped validate the themes and codes through independent coding and group consensus. Based on the final matrices of collapsed themes, the research team wrote summary statements to describe the findings.

Thirteen people with MS participated in the focus group sessions. The majority of participants had relapsing-remitting MS (n = 12) and were White women (n = 10) with an average age of 45 years (SD = 9.3). Participants had a mean Patient Determined Disease Steps (PDSS)

 score of 2 (range, 0-5). Participants danced with their spouses (n = 6), friends (n = 2), or research team volunteers (n = 5).

Ballroom dance participants identified many benefits to the program. Four major themes emerged from the data: (1) physical and psychological benefits, (2) positive social support leading to enjoyment/fun, (3) improved confidence, and (4) physical and social facilitation of activity.

Theme 1: Physical and Psychological Benefits

Participants noted various physical and psychological benefits they experienced from participating in the ballroom dance program.

Physical benefits reported by participants included improved strength, endurance, coordination, and balance. Several people reported experiencing improved strength from the dance movements, especially in their lower extremities, and theythat this helped compensate for weakness resulting from MS. They explained that different types of movement, particularly sideways and backward, helped them to “do something that normal people don't even think about” (Participant #1), thus noting that physical ability developed through dance. “It evens out the strength in your legs. Forever, my left leg has been my bad side…and it's making that left leg work and have phenomenal improvement” (Participant #2). This participant related that the improved leg strength also contributed to better posture, reducing the need to use or bend over a walker.

Increases in strength were accompanied by improved endurance (Participant #7) and stamina, with 1 person stating that she was able to stand more and walk with more stability (Participant #1). Another mentioned improved ability to stand and sing in choir for almost entire church services (Participant #2), and another noted the ability to stand up and sit down more consistently during church services, whereas, previously, she used to sit for the whole service (Participant #3). Participants also noted enhancement in balance, with Participant #2 stating, “My balance is one of my biggest problems. I think I've improved the balance because the muscles got tweaked; they got wear.” Another participant summarized the changes experienced from dancing, saying they had “better coordination, better balance, better memory” (Participant #4). In this case, better memory also speaks to the nonphysical benefits described below.

In addition to the physical benefits, individual participants reported a variety of psychological or nonphysical advantages, such as reduced symptomatic fatigue, alleviated anxiety, diminished depression, and better memory. For example, Participant #13 noted, “The point in which I begin to feel fatigue is much, much, much later [in the day].” Participant #8 commented on anxiety, “I generally had a good amount of anxiety. Dance class has definitely cut a portion back down.” Another noted that before taking the class, she was “back on antidepressants, not wanting to exercise and not really caring. But this dance class has turned that all around attitude-wise. I'm ready to come off my antidepressants again” (Participant #3). Participants also reported a significant improvement in positive affect and emotional well-being. “The dance class has been the first thing in the past 3 years that has actually made me happy or have a genuine smile, so it's lifting my spirits” (Participant #11).

Theme 2: Positive Social Support Leading to Enjoyment/Fun

Ballroom dance sessions fostered positive social support for participants, which they described as emotional support, safety, and enjoyment being around others with the same diagnosis. One person noted a camaraderie that prevented embarrassment and described it as follows: “I certainly didn't worry about being embarrassed with this group.…I enjoyed the social interaction and the music and the camaraderie with all these people [who] had something in common, more than I enjoyed the dancing itself” (Participant #12). Another noted, “It has changed my and my wife's perception of the possibility of us actually being able to dance without making a fool of ourselves. Here it didn't matter whether we made a fool of ourselves” (Participant #13). Another participant compared the dance sessions to a support group, noting that although traditional support groups are beneficial, the dance sessions offered a more positive and active way of connecting with others: “It was a great support group…it's better than a support group because it's people who want to be active and want to be doing something, and you are with people who are in the similar situation, but you are not sitting around in a circle bemoaning it so much. I mean, I am social worker, I am not against support groups, but to me it was a more positive way to be around people with [a] similar situation” (Participant #10).

The level of support participants felt was exemplified by 1 participant who, on her way into the first class, discussed her disease for the first time with her friend and dance partner. After participating in the sessions, she felt more comfortable discussing her disease: “After 1 class [I was able] to talk to 2 young ladies [who] were in the class. And that was the first time that I spoke to anyone [who] had it and so, I felt another connection and they were very supportive. Well, we were standing outside, and…we all started talking. And then, before I knew it, I was talking, and I started crying” (Participant #11).

All of these experiences emphasized the safe nonjudgmental atmosphere that was formed organically by the group; participants felt they could speak, act, or disclose without fear of being labeled, singled out, or embarrassed. The dance intervention seemed to foster a community feeling as indicated by the comment from Participant #12 above, in which the social aspects were “more enjoyable than the dance itself.”

Group interaction and the comfortable learning environments made the dancing fun. Participants universally and repeatedly stated that the dance sessions were fun and enjoyable and attributed this to the dance activity itself. They enjoyed learning different steps and found themselves listening to music and moving to it at home or in the car, thinking about which steps they could use. They appreciated having choices in what they wanted to learn: “We were like, we wanna learn this, so it made it fun” (Participant #5).

When talking about the group dance activity, Participant #8 remarked, “My exercises that I do myself are fun because I make them fun, whereas this in itself is fun. It's exercise that's actually entertaining you. Lifting weights, you get a different kind of enjoyment [out] of it, but it's not fun, dancing's fun.…I look forward to it all day. Then, afterwards, you enjoy it afterwards.”

Another participant noted how the dance sessions allowed her to escape from daily stresses and fully immerse herself in the experience: “It's rush hour. Taking time to get down here and you're kind of frazzled like, OK…you run through rush hour. You get here and forget all of that.…When you get in that dance room, everything's out the door. We're having fun for an hour, and that hour went by fast. We learned so much so fast.…It's like you're in a different zone. That's how I felt when I was dancing. Not a care in the world, nothing, not my son, not my house, not anything” (Participant #7).

Participants also said that the enjoyable nature of the sessions contributed to their commitment and adherence. Participant #9 specifically noted, “Because I dance with my husband, I think it was good for us as a couple. We had, like, date night twice a week.” This indicates that the enjoyment from the dance sessions motivated them to participate consistently.

Although participants did not explicitly describe dance as an artistic and aesthetic experience, they highlighted the enjoyment and fun aspects. A participant noted, “My general outlook when I was doing it was just better, [because] I enjoyed it, and I got involved in some other musical endeavors at the same time, and all of it together was just, like, ‘Oh wow, this stuff is happy producing; that's good’” (Participant #12).

Dancing was also described as enjoyable: “It's like a hobby; it was fun” (Participant #5) “where[as] exercise is work” (Participant #6). The positive social support and positive attitude cultivated feelings of improved confidence and well-being.

Participating in the ballroom dance program helped to build participants’ confidence in both their physical abilities and emotional well-being. This theme encapsulates the dual aspects of confidence enhancement: physical confidence and emotional confidence.

 Several participants reported increased confidence in their physical abilities, which included exercise and daily activities. They noted that this newfound confidence was accompanied by a sense of happiness in learning and participating in more activities. They were happy that they had been able to enjoy dancing despite having MS and were now confident in their physical ability to go dancing. A participant commented, “I think about the fact that I just learned how to do 6 dances in such a short amount of time. That's—pat yourself on the back, can't believe I did it, but I kept going and I did it” (Participant #7). This participant also noted that this sense of accomplishment encouraged them to try different types of exercise. Participant #4 noted, “It's given me more confidence. I know what I can and can't do.…We learned kind of how to work with the MS and dance with the MS.” Both participants talked about learning 6 dances and their improved confidence in being able to do different things.

Participants felt proud of their perseverance and success despite physical challenges. This sense of achievement contributed to their overall confidence, encouraging them to engage in more physical activities. As Participant #11 stated, “I had not been able to do any exercise, so this was the first time.…It gave me a little bit [of] incentive to try, outside of dance class, going to do something [else] as well.”

Another participant learned to pay attention to breathing much more than they had done in basketball or other sports. They found it beneficial as they “didn't want to keep leaving the room to catch a breath so I just patterned my breathing. Seeing myself doing that in there, I'm using it for other things now” (Participant # 8). One person noted a new confidence to sign up for lessons at a local community center to be able to “exercise in a different way” (Participant #6).

However, not all experiences were fully positive. Some participants mentioned frustration with the dance steps or their inability to go fast enough. One person noted, “One of the hardest [things] for me is coming back every time and being so frustrated because I couldn't remember what she taught the last time” (Participant #13). Another talked about partners with different styles leading to frustration and the need to leave for a few minutes to “regroup” and refocus on it being fun, not “an exam” (Participant #7).

Participants also experienced improved emotional confidence, including self-satisfaction, accomplishment, and pride. One participant expressed, “I won't go into doing new things with such trepidation as I had before because I see that I can do it” (Participant #1).

The supportive and fun environment of the dance sessions significantly contributed to this emotional uplift. Participants enjoyed bonding with others while learning something new, which positively impacted their overall self-efficacy.

Although participants used the term “confidence,” their comments align with improved self-efficacy in physical or social-seeking behaviors.

 The dance program specifically enhanced both physical and emotional self-efficacy and contributed to participants’ willingness to engage in new physical activities and social interactions.

Theme 4: Physical and Social Facilitation of Activity 

The ballroom dance program helped participants overcome specific physical barriers to exercise related to their MS. The presence of partners, adaptations (eg, chairs), and the social climate created by the instructors and other participants provided the necessary support and assistance during the dance classes.

Partner support for balance and stability. Participants appreciated the support from their dance partners, which helped them maintain balance and stability during the program. As Participant #12 mentioned, “Having a partner [when] dancing helps because you at least have somebody to rely on for balance and stability.” Participant #2 mentioned that she was able to dance without a walker because she had a partner.

The program also made adaptations to accommodate participants’ needs, such as providing chairs for rest and support. Participant #2 shared their experience: “…the partners would drag the chairs out and things like that. We figured out how to set up the chairs so there was one there when you needed to sit down. Certain people needed a chair like, now.” They also appreciated the adaptability of the sessions (ie, that changes were made to accommodate varying abilities of participants). The adaptations ensured participants could rest whenever needed during the dance class, which addressed a crucial barrier to exercise for many people with MS.

Social acceptability was fostered by the dance instructor, who was described as lighthearted and frequently caused laughter during the sessions, setting a fun tone for the class. Rather than focusing on the participants’ MS, the instructors fostered an environment of acceptance and normalcy. A participant captured this feeling of inclusivity and normalcy, saying, “I felt like I was part of the normal world and not different” (Participant #1). Another stated, “She didn't hold back from teaching us different steps just because we have MS” (Participant #12). This approach helped to normalize the experience for participants, making the dance sessions a social activity where their condition was not a limiting factor.

The results of this novel study highlight perceived experiences of people with MS who completed a partnered ballroom dance intervention. Dance participants experienced physical and psychological benefits, feelings of social support and enjoyment, improved confidence. In addition, the activity facilitated exercise. These themes support and expand on what has been previously reported in mainly quantitative studies, and they provide further evidence of the benefits of social dance for people with MS.

To our knowledge, this study is the first to describe the experiences of people with MS who participated in partnered social dance. A recent program evaluation of a nonpartnered, group ballet intervention for people with MS by Scottish Ballet also had a qualitative component. This study found themes similar to ours.

 However, in contrast to what we report, participants from the ballet program also described an attraction to dance, explained as being due to the artistic aesthetic of dance (ie, ballet) and the prestige of the ballet company. Participants also praised the expressive and artistic nature of ballet.

 However, although our participants did not specifically mention partnered dance as artistic expression, they did appreciate dance as an artistic endeavor along the same lines as music.

 have investigated physical and psychological outcomes in various dance programs, including partnered ballroom

 but all without a formal qualitative component except for the previously mentioned program evaluation.

 These studies reported improvements in measures of gait,

 Cognition, measured by the Paced Auditory Serial Addition Test, was reported to have improved after a recreational ballroom dance intervention

 and trended toward improvement after a multimodal dance for performance intervention.

 Overall, these measured improvements in physical function and cognition were consistent with the improved strength, endurance, coordination, balance, and cognition experienced by our focus group participants.

Our focus group also reported psychological or emotional benefits that, again, reflect what has been measured in previous dance studies. Two studies reported decreased symptomatic fatigue after a ballet intervention,

 as well as after a dance-for-performance intervention.

 One study showed that quality of life improved after ballroom dance

 and, in another, physical activity behaviors were shown to be positively affected after salsa dance.

 Although only 1 of these studies had a formal qualitative component, several anecdotally reported that participants found the dance experience to be positive or enjoyable.

 Although others have reported benefits in physical and psychological function using laboratory or survey instruments, the fact that participants described similar benefits attests to the clinical significance of some of these previously reported findings.

Our participants reported positive social support coming from a group/community and from a partner. They found being with others with MS and having fun, all while learning a new activity, to be normalizing. Some felt more able to acknowledge their MS. Dance was thought of as fun, and not physical activity or exercise. Participants also reported that partners provided physical and emotional support as dyads navigated new and sometimes challenging dance steps, which gave them a shared sense of facing challenges together. Participants reported feeling more confident, felt barriers to exercise were lessened with partners, and enjoyed the overall social support of the environment. They eagerly anticipated dance sessions and described the experience as “date night” fun. Overall, our results align with the finding that partnered exercise is a top priority for people with MS and their partners.

 They also suggest that partnered dancing may provide certain social benefits that are different from nonpartnered forms of dance, such as ballet or rhythmic movement.

People with MS who participated in a recreational ballroom dance intervention experienced more confidence in their ability to perform physical activity specifically and other wellness activities in general. This self-directed confidence, or self-efficacy, is very important for the incorporation of physical activity or other health-seeking behaviors into one's lifestyle, as self-efficacy (eg, physical) is a significant component of this type of behavioral change.

 This also suggests that physical activity considered fun or recreational would be more likely to be integrated into one's life.

Participants reported that balance and stability barriers to dancing were reduced due to the direct physical help provided by their dance partners. These reports suggest that some dance experiences may be unique to partnered dance. The sessions were designed to be accessible, including temperature control and accommodation of MS-related fatigue, and participants appreciated the instructor's abilities to adapt programming to individual and group abilities.

The experiences reported by people with MS are similar to what has been reported in qualitative findings in people with Parkinson disease during partnered ballroom

 as well as from a mixed group of people with Parkinson disease and people with MS.

 This latter study also emphasized the transformative experience of dance. MS has a different pathophysiology than Parkinson disease, but the similar findings suggest the overall dance experience may be comparable to the experience of those with other neurological diseases.

This study had several limitations, all commonly observed in focus group research. First, the small sample size and potential selection bias may limit the generalizability of the findings. The sample lacked diversity in terms of ethnicity, sex, social background, and disease severity, which could impact the applicability of the results to a broader population. Second, direct comparisons with other studies were not always feasible due to the qualitative research design. Although all participants reported enjoying the partnered social dance and experiencing benefits in either physical and/or psychological/emotional domains, it is important to acknowledge that these benefits might be applicable to any dance or group exercise. Lastly, this study did not compare partnered dance with nonpartnered dance or other physical activities. Therefore, it remains uncertain whether the observed benefits are unique to partnered social dance or whether they could be derived from alternative forms of dance or exercise. Future research should consider addressing these limitations to provide a more comprehensive understanding of the impact of dance on individuals with MS.

This study found that participants experienced specific physical, psychological, and social benefits from partnered dance. It is possible that the experience of any dance to music may elicit physical and emotional, or self-efficacy, improvements, as well as a positive attitude toward exercise or physical activity

; however, participants in this study found partnered dance specifically removed barriers to exercise and provided emotional support that other forms of dance may not. Further investigation is needed to fully understand the potential benefits of partnered or ballroom dance for individuals with MS. Overall, quantitative and, now, qualitative studies demonstrate the feasibility and benefits of dance as recreational physical activity for people with MS.

Ballroom Dancing for People With Multiple Sclerosis: Perceptions of the Experience

Fatigue: Take Control (FTC) is a multimodal self-management program. Results of a previous clinical trial showed its effectiveness at improving fatigue related to multiple sclerosis (MS). The objectives of this study were to use the very long-term data from the FTC study to understand fatigue management strategies used 5 years after enrollment, identify facilitators and barriers to utilizing strategies, and explore the potential relationships between the strategy used and fatigue outcomes.

This study adopted a cross-sectional survey design. A subset of the original FTC clinical trial participants was invited to complete the Modified Fatigue Impact Scale for fatigue severity measurement and a 17-item questionnaire about their fatigue management strategies 5 years after enrollment. Descriptive statistics and content analysis were used to analyze quantitative and qualitative data using the COM-B (capability, opportunity, motivation-behavior) model for behavior change as a framework.

Planning daily activities and prioritizing tasks were the fatigue management strategies most often reported. Facilitators to utilizing management strategies included access to enabling devices, paid professional help, companions, and maintaining a positive attitude. Barriers to implementing strategies included high cost, the presence of other health problems, and temperature sensitivity. Internal focused strategies showed a trend toward reducing fatigue impact when controlled for typology group assignment.

Future work may focus on promoting low-cost strategies to help people with MS manage fatigue. Internal factors (eg, motivation) play an important role in influencing the application of MS fatigue self-management strategies. Future clinical trials with larger sample sizes that assess the applicability of the COM-B model are warranted.

From the Research Department, Veterans Affairs Portland Health Care System, Portland, OR (SCS, NS, SS, JN, CLH) and the Department of Rehabilitation Medicine, University of Washington, Seattle, WA (BY, FM-G). 

: ShienPei Silverman, MA, VA Portland Health Care System, 3710 SW US Veterans Hospital Road, Mail Code P5F NCRAR-Silverman, Portland OR, 97239; 

Thank you to all the participants who continued to engage with us. We also thank Drs Gabrielle Saunders and Lindsey M. Knowles, Dr Carly Meyer for her input on the COM-B model, Dr Xia Zhang for her anthropological input, and the constructive feedback of our internal peer reviewer, Dr Kristine Alpi, Oregon Health & Science University librarian. We also thank Dr Michelle Cameron for her clinical expertise and our anonymous external peer reviewers.

 Data collection in the parent study was provided by the Department of Veterans Affairs, ClinicalTrials.gov identifier: NCT01918800.

 Online poster presentations of this study were made March 17, 2021, at an American Academy of Neurology meeting; January 1, 2021, at an Americas Committee for Treatment and Research in Multiple Sclerosis forum; and April 8, 2021, at Oregon Health & Science University Neurology Research Day.

 The authors declare no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Multiple sclerosis (MS) is a chronic inflammatory and degenerative disease of the central nervous system. MS-related symptoms may vary by person, but fatigue is experienced by over 80% of people with MS and is often perceived as the most debilitating symptom, substantially impacting quality of life.

 MS-related fatigue is distinctive because it is unpredictable and fluctuates in association with heat and humidity. People with MS may experience fatigue symptoms that can manifest suddenly and worsen over time, which eventually negatively impacts their ability to participate in daily activities.

 Previous literature shows that nonpharmacological interventions for MS fatigue are preferred over pharmaceutical therapies given the lower cost, fewer adverse effects, and better efficacy.

Self-management programs for chronic conditions, including MS, are nonpharmacological interventions that educate people on how to actively manage the impact of their conditions through behavioral change.

 Since publication of the 1998 international treatment guidelines

 outlining recommendations for fatigue management, various self-management programs have been developed that are specific to MS fatigue management. Some focus on a single strategy, such as energy conservation,

 while others recommend using multiple strategies, including medical treatment, physical exercises, and psychological support.

 These programs have shown promising effects in improving MS fatigue and overall health outcomes. As an example of a multimodal behavior change intervention, the Fatigue: Take Control (FTC) program is an MS fatigue–specific education program that provides knowledge and skills to self-manage fatigue. A multisite randomized controlled trial (RCT) showed that the FTC was effective in reducing fatigue impact at the 12-month follow-up.

 However, very few studies have been conducted to examine whether the program remains effective in the very long term (VLT; ie, 5 years post intervention). In a quantitative report, Norton et al

 compared the VLT fatigue impact and behavior changes in individuals who received FTC with those who received a comparable program (MS: Take Control [MSTC]) and found no difference in the VLT benefits between the 2 programs after 5 years. They also reported that the most frequently endorsed strategies during these 5 years were prioritizing activities (76%), managing sleep quality (69%), managing weakness (66%), managing diet (65%), changing exercise routine (64%), and managing heat sensitivity (63%). However, little is known about how participants were using these strategies 5 years after enrollment and what factors may have influenced their endorsement of certain strategies. Therefore, the purpose of this study is to (1) understand how people with MS used the endorsed strategies to manage MS fatigue 5 years after enrollment, (2) identify facilitators and barriers to strategy utilization, and (3) explore potential relationships between strategy used and fatigue outcome.

Michie’s Capability, Opportunity, and Motivation Behavior Model (COM-B) 

Previous studies have demonstrated the value of using the COM-B model and Theoretical Domains Framework (TDF) to understand factors contributing to physical activity among people with MS. Specifically, Riemann-Lorenz et al

 reported long-term (12 months) adherence and determinants of physical activity among people with MS in Germany and the United States using the COM-B framework. Both studies developed survey questionnaires mapping to the TDF constructs and COM-B model. The COM-B model

 assumes that behavior is influenced by 3 factors—the person’s physical and psychological capability, the person’s physical and social opportunity, and the person’s reflective and automatic motivation—and that behavior change can only come about if 1 or more of these 3 components are modified. Capability and motivation are considered internal. Opportunity refers to physical and social factors outside of an individual’s control; hence, they are external. The 14-item TDF

 provides an explanation to the 3 primary sources of behavior in the COM-B model (eg, knowledge, skills, beliefs about capabilities) and especially aims to help with evaluating barriers and facilitators of the studied behavior. See 

 (All supplemental materials are available as a PDF at the bottom of the online article.) for details on the relationship between the COM-B model and TDF framework.

This study utilized COM-B and TDF as guiding frameworks to interpret data that had already been collected, as the FTC program was developed before the COM-B model was available. It is important to note that the COM-B model and TDF are not study aims. Rather, they served as guides and tools for our analyses.

The original multisite RCT (N = 204) compared the MS fatigue-specific intervention program, FTC, with a general MS education program, MSTC, on fatigue impact using the Modified Fatigue Impact Scale (MFIS).

 shows the content of both interventions. Both programs demonstrated effects in fatigue impact reduction, but outcomes did not differ between the programs immediately following program completion or at 3- or 6-month follow-ups.

 However, there was a clinically meaningful and statistically significant improvement in the FTC group relative to the MSTC group at the 12-month follow-up at 1 site (n = 74).

 This led us to wonder whether there were long-term benefits of FTC that were not identified in the initial study. To that end, institutional review board approval was sought for a 5-year follow-up to retest the MFIS scores and develop a survey (

) to assess participants’ current experience of fatigue management. Additional details of the programs, approvals, consent, and trial design have been reported previously.

The present study was a cross-sectional survey collecting quantitative and qualitative data. Convenience sampling

 was used to recruit participants from the original RCT who completed the 12-month follow-up at 1 site (out of 4), regardless of their initial group assignment. At the original study’s baseline, 74 ambulatory adults with MS of any subtype on any medications with moderate to severe fatigue (MFIS, ≥ 25) and without severe depression (Beck Depression Inventory–II, ≤ 28) participated.

The 17-item survey in Table S1 was developed by the experts who helped develop FTC. This survey asked about the self-management strategies used by study participants 5 years after enrollment in the initial RCT. More specifically, 15 questions were asked about participants' current use of FTC strategies for managing MS fatigue. The last 2 questions asked participants what they recalled of the RCT interventions and what additional strategies they were currently using for fatigue management. Each question allowed yes and no answers and free responses.

 is a validated, self-reported outcome measure assessing the impact of MS fatigue on individuals’ physical, cognitive, and psychosocial functioning over the past 4 weeks. The 21-item MFIS asks participants to rate their perceived frequency of certain fatigue-related situations. Each item is scored from 0 to 4, with 0 indicating 

. A higher total score indicates a higher level of impact on functioning, which reflects a higher fatigue severity.

Surveys were sent via the mail. Participants’ demographic data, such as age, sex, and income, were retrieved from the parent study.

All participants signed a Veterans Administration Portland Healthcare System Institutional Review Board–approved consent form at parent-study enrollment and again 5 years later. Participants provided verbal consent prior to receiving the mailed questionnaires for the follow-up survey.

The descriptive statistics method was used to report participant characteristics and the most endorsed strategies.

 with a combination of deductive and inductive coding approaches was used to analyze the free responses that were stored in Microsoft Excel. Initial coding was guided by the FTC program. Following this, a codebook was developed using an iterative process. Themes were generated with the guidance of the COM-B model and finalized with consensus among research team members.

To explore the potential relationship between strategy uses and fatigue outcomes, we created a summary for each participant in 3 areas reflected by survey responses: (1) expressed emotion, (2) number of strategies, and (3) use of external aids in managing MS fatigue (

). We then classified these characteristics into 5 categories: internal focused, combined, lack of control, external focused, and limited response. Internal-focused answers centered on mindfulness, determination, knowledge, and skills corresponding to 

. A combination of strong internal-focused answers with the use of multiple external aids, including devices and help from others, would be classified as 

. Lack of control answers exhibited the sentiment of 

. Those who relied almost exclusively on external aids/help were grouped under 

 included 3 participants who responded to limited items or with limited words and hence were impossible to categorize in any of the 4 other subgroups. Once typology subgroup was assigned, individuals were divided, based on their group assignment in the original trial, as FTC or MSTC.

The person’s MFIS scores at baseline and 5-year follow-up were also compared.

The authors do not self-identify as people with MS or other disabilities. While all of us have either clinical and/or research experiences working with people with MS and other chronic conditions, we do not have insider perspectives or lived experience in managing chronic disabling symptoms (eg, fatigue) on a daily basis. We appreciate participants’ firsthand perspectives that enabled us to better understand their experiences of fatigue management.

Participant Characteristics and Descriptive Statistics 

Thirty-eight of 74 participants from the 12-month follow-up responded to the VLT follow-up survey. One was removed from this report due to no free responses, so the final sample included a total of 37 participants. Of the 37, 31 were women and the average age at baseline was 55 years (range, 31-73). Thirteen participants reported less than $30,000 in annual income. Fifteen were from the FTC group and 22 were from the MSTC group. Twenty-two participants were diagnosed with relapsing-remitting MS and 15 had progressive MS. Additionally, previously reported quantitative data from the VLT survey showed no significant differences in the baseline demographic characteristics and MFIS scores among participants (n = 37) and nonparticipants (n = 36) of the current study.

On average, participants endorsed an average of 8 strategies (range, 1-14). Thirty-two participants reported using 4 or more strategies, 3 participants reported using 3, and 2 reported using only 1 strategy. Of the 15 strategies listed, the 7 most endorsed were: planning daily activities (n = 28), prioritizing tasks (n = 28), managing sleep habits (n = 25), managing eating habits (n = 24), managing weakness (n = 23), managing heat sensitivity (n = 22), and resting/napping (n = 22).

With guidance from the COM-B model, 2 themes were generated from the free responses to the survey. Theme 1 presented the most frequently used strategies for MS fatigue management as well as how they were used among participants, representing the 

 construct in COM-B. Theme 2 aligns with COM-B’s 

, revealing internal and external facilitators and barriers to implementing useful strategies. Example quotes for theme and subtheme are presented in 

Theme 1: Frequently Used Strategies for MS Fatigue Management  

Improve efficiency and productivity by strategic planning.

 Most participants shared that strategically planning their day according to their energy level and the importance of tasks was an effective way to minimize the impact of fatigue on their daily functioning and maximize productivity. For example, participants who are aware that their fatigue typically progressed as the day went on would try to arrange most activities during the time when they had higher energy levels. As one stated, “Anything that uses extra energy is done in the morning.” They also scheduled activities based on their priority. For things that are less time sensitive, participants shared the mindset that not everything has to be completed on the same day, as this would probably worsen the fatigue.

Energy conservation: pacing, resting, using assistive devices or services.

 Energy conservation by pacing activities, resting, and using external aids was another common strategy shared by participants. Knowing that fatigue is a physical and mental state where energy is lacking, participants shared that energy conservation was a great help to prevent fatigue or slow down fatigue progression. Participants described various ways they save energy daily. Examples included taking more breaks during physical activities, using mobility aids like walkers and scooters for longer travel, using assistive tools like reachers/grabbers, and delegating tasks like cooking and cleaning to others.

 Many participants recognized the relationship between sleep quality and fatigue; therefore, taking steps to improve sleep quality was key to managing fatigue. However, participants expressed that improving sleep quality was challenging due to other sleep-disrupting symptoms such as muscle spasms, bladder problems, and heat sensitivity. Hence, in addition to making modifications specific to sleep hygiene (eg, avoiding blue light before bedtime and adjusting the bedroom temperature for comfort), participants also attempted to improve sleep quality through management of other symptoms, including making nighttime bathroom trips more convenient with a commode in the bedroom and investing in sleep-enhancing products like cooling pillows and lightweight blankets.

Stay physically active without overexertion.

 Although acknowledging the benefits of physical activity and the importance of staying physically active, our participants were keen to avoid the overexertion and overheating that could exacerbate their fatigue. They implied that knowing which type of exercise was beneficial, limiting the time spent on physical activities, and using tools to prevent overheating were crucial to prevent increased fatigue due to overexertion. To achieve these goals, participants shared that they learned to become knowledgeable about the amount of exercise that worked best for them, utilized fitness tracking devices to monitor the amount of exercise, and carried “cooling wraps and a small backpack that is an insulated cooler for extra ice packs” when the temperature was hot.

 When the original program interventions were delivered in 2013 and 2014, the American Heart Association guidelines for healthy eating were used in both the FTC and the MSTC. Many participants said they endorsed dietary adjustments and mindful eating habits to manage symptoms such as overheating, appetite changes, and hot flashes, all of which could aggravate fatigue. For example, a participant shared, “I try to limit myself to 2 cups of coffee per day, since I noticed too much caffeine makes me overheated.” Some participants also shared that they felt better after switching to a plant-based diet.

Theme 2: Facilitators and Barriers Influencing the Implementation of Fatigue Management Strategies  

This theme identified external and internal factors that supported or interfered with the implementation of strategies for MS fatigue management. Participants reported that availability and access to needed devices and services, the presence of a companion, and support from family were external factors that enabled them to use fatigue management strategies. These factors reflect the 

 construct of COM-B. Internally, their mindset and desires, parallel with COM-B 

, also influenced the results of whether they could and how they could manage fatigue.

Availability of and access to needed devices and services.

 As in theme 1, our participants utilized various devices to make their lives easier, including mobility assistance, cooling devices, sleeping aids, bathroom aids, activity trackers, and postural awareness equipment. Several participants also shared that they had access to health care and housekeeping services, including physical therapy, acupuncture, counseling, chiropractic care, and a house cleaner, which was crucial to maintain their physical, mental, and emotional health.

 As in theme 1, participants acknowledged the importance of proper exercise to help them maintain their energy. They also endorsed that having exercise companions facilitated their ability to exercise, which speaks to TDF’s social influence under COM-B’s 

. These companions were often pets, such as a dog, a horse, and even a turtle. On the other hand, losing a companion could be a blow to being active; as a participant shared, “After my dog died and I stopped taking him on daily walks, I walked less and less. Now I walk much less.” This contingency or dependent relationship speaks to reinforcement in TDF under 

 Participants stated that their family members (eg, spouse, daughter, or ex-husband) influenced their lifestyles and, therefore, their ability to manage fatigue. Family support helped reduce the physical and mental burdens of people with MS. For example, a supportive spouse helped modify their home to make the environment more accessible. However, some participants indicated that they had the opposite experience; for example, they shared that it was difficult for them to eat healthier and/or improve sleep quality because of their spouses.

Personal factors: intention, emotions, beliefs.

 Many participants described compassion for themselves, acknowledging and accepting their daily limitations or expressing the importance of not badgering themselves or feeling guilty. One participant highlighted the importance of not feeling guilty about napping and resting, a fatigue management strategy that may be perceived negatively. They implied that how they managed fatigue was also inherently related to their own desire and mood, which reflects the 

Mixed-Methods Comparison of MFIS by Typology 

Robert J. Fox, MD, PhD

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