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Treatment Satisfaction in Multiple Sclerosis

Urinary incontinence (UI) and fecal incontinence (FI) are challenging manifestations of multiple sclerosis (MS) that have historically been treated with limited success. Sacral neuromodulation (SNM) has provided successful resolution of UI and FI in the general population and in patients with neurologic conditions, including MS. We report on 6 patients with MS-related incontinence treated successfully with SNM and review the literature.

 Medical records were reviewed retrospectively to identify patients with MS seeking treatment for incontinence. Six patients were identified, and each is presented with follow-up assessment of the severity of UI or FI.

All 6 individuals with MS had severe incontinence that had been refractory to therapies that included medications and pelvic floor physical therapy. Five patients reported severe UI and 2 patients reported severe FI. Each patient was successfully treated with SNM, with large reductions of incontinence scores and improved quality of life.

 In this case series, SNM was effective as a treatment for UI and FI among patients with MS. These findings confirm other published series that have reported the success of SNM in patients with MS with incontinence. Sacral neuromodulation should be considered as a potential treatment option for patients with MS and UI and/or FI.

From the Reno School of Medicine, University of Nevada, Reno, NV, USA (ET, KS), and Nevada Surgical Associates, Reno, NV, USA (KS). 

Erika Thys, BA, Reno School of Medicine, University of Nevada, 1664 N Virginia St, Reno, NV 89557, USA; 

 The authors declare no conflicts of interest.

Multiple sclerosis (MS) is an autoimmune disease primarily targeting the myelin-producing oligodendrocytes of the central nervous system and can cause demyelination and axonal loss in the brain, brainstem, cerebellum, and/or spinal cord.

 These demyelinated lesions give rise to bladder problems in 50% to 90% of patients with MS, including a high prevalence of overactive bladder (OAB) and urinary incontinence (UI).

 The latter was even more frequent in patients with MS if they were disabled and female.

 Fecal incontinence (FI) is found to affect more than 50% of patients with MS, which is far greater than the 2% to 20% prevalence in the general population.

 These symptoms impact the quality of life and social interactions of patients with MS and create additional burdens for caregivers.

The current management of UI and FI in patients with MS begins with first-line behavioral modifications such as bladder training, pelvic floor physical therapy, fluid management, fiber, antidiarrheals, and dietary changes. Historically, second-line therapies for UI are pharmacotherapies, including anticholinergics and ß

-adrenergic agonists, and/or intermittent self-catheterization. Traditionally, third-line therapy options are intradetrusor botulinum toxin, consisting of repeated treatments every 6 to 12 months, or posterior tibial nerve stimulation, consisting of a weekly office-based therapy for 3 months. Advanced therapy is sacral neuromodulation (SNM), involving placement of a neuromodulation lead and a subcutaneous pulse generator.

Sacral neuromodulation has been an effective treatment for UI and FI since its approval by the US Food and Drug Administration in 1997.

 The mechanisms of action for SNM include inhibition of afferent sensory nerves of the bladder and rectum in the spinal cord, modulation of efferent voluntary somatic input to the bladder, and stimulus of autonomic motor nerves.

 Recent studies report 90% effectiveness in clinical trials for treatment of UI and FI.

 However, SNM was originally incompatible with MRI, and SNM is less accepted by insurance carriers for patients with neurologic disorders, including MS. The Centers for Medicare & Medicaid Services (CMS) and many insurance companies continue to exclude those who experience UI due to a neurologic condition, ie, cerebrovascular accident, spinal cord injury, MS, detrusor hyperref lexia, and other types of chronic neurogenic voiding dysfunctions.

In this study, we retrospectively evaluated the efficacy and safety of a newer, fully MRI-compatible SNM treatment for 6 patients with MS who were experiencing refractory UI, FI, or both before treatment.

Under an institutional review board–approved protocol (WCG IRB), a retrospective medical record review was undertaken to identify all patients with MS who sought treatment for UI and FI at the Continence Center of Nevada Surgical in Reno, Nevada. Since 2017, all patients have provided detailed responses to questionnaires regarding bowel and bladder symptoms and the presence of neurologic conditions. Informed consent was obtained from all individual patients regarding responses to questionnaires being used for clinical assessments or publication in any medium. In 2022, 6 patients with MS were identified in the database. All were ambulatory, 2 with the use of assist devices (cane or walker); no one used a wheelchair. Disease severity was not quantified, and to our knowledge, no patient referred to the center with MS declined or was refused SNM therapy. The patient characteristics are described in 

. After SNM implant (Axonics Inc), patients reported, in person or by phone, updated responses to the bladder and bowel questionnaires. The Michigan Incontinence Symptom Index (M-ISI)

 and the Fecal Incontinence Severity Index (FISI)

 were used to assess the severity of symptoms before and, on average, 9 months after therapy.

In coordination with their neurologists, each patient had a percutaneous nerve evaluation. During the procedure, a localization needle was placed into each S3 foramen, and motor response to stimulation was carefully observed, with assessment of anal bellows, perineal lift response, and great toe flexion. In subsequent days, each patient reported that the trial was successful, and SNM implant via the S3 foramen under fluoroscopic guidance was subsequently performed in the operating room using local anesthetic with sedation, with a median implant procedure time of 28 minutes. There were no adverse events during a minimum of 12 months of follow-up.

In this study, 6 patients with MS who sought treatment for UI, FI, or both were identified in the database. Each patient had failed medication therapy and pelvic floor therapy with exercises and biofeedback. One had previous botulinum injections and 1 had a failed previous bladder sling. All 6 patients experienced relief after SNM, as measured by their M-ISI and FISI scores. As depicted in Table 1, the median M-ISI score before SNM was 28 and after SNM was 6. The 2 FISI scores were 41 and 42 prior to SNM and both were 0 after SNM.

All the patients reported that SNM was successful. In addition to the improvements in UI and FI, all the patients reported significant improvements in quality of life. Patients described feeling relieved and having peace of mind going about their daily lives. Patient 1 reported being able to “take a vacation for the first time in years” after noticing that she could go longer periods of time without needing to use the bathroom. Patient 4 reported experiencing “peace of mind” and that the treatment “gave back [his] life.” This has led to an improvement in his sex life and intimacy as he is “no longer worried about having any accidents.” He reported being able to return to work and resume teaching because of SNM therapy. These anecdotes are consistent with the clinical findings that SNM allows patients to reach the toilet in time and enables complete emptying of the bladder, significantly improving quality of life, volume voided, urgency, and urge UI.

Similar to other reports in the literature on older devices (

), this small case series, using newer, MRI-compatible devices, found that SNM was a very effective therapy, resulting in significant improvement in UI and FI for patients with MS.

According to a 10-year retrospective cohort study with 4461 patients with and without MS, more patients with MS were diagnosed as having UI and FI than those without MS.

 Also, FI and UI occur at a younger age in patients with MS than in the general population. Sacral neuromodulation acts via neurologic mechanisms, offering logical plausibility to treat neurogenic incontinence. Even a single previous episode of FI can cause anxiety and lead to isolation and self-imposed restrictions to avoid the risk of embarrassment, shame, or humiliation associated with that incident.

Although not completely understood, SNM’s stimulation of the S2-S3-S4 nerve roots is thought to provide relief through a combination of efferent motor stimulus, blocking afferent inputs, and blunting spinal cord reflex responses and brain responses to detrusor and pelvic floor musculature.

 Published studies support the conclusion that SNM provides relief of UI and FI in patients with neurogenic incontinence, as does this series.

 In practice, however, patients with MS experiencing UI or FI are often considered ineligible for SNM or denied insurance coverage based on preliminary SNM studies, despite more recently published studies demonstrating its efficacy.

 In a prospective cohort study, 17 patients with MS were treated with SNM, and 16 of them (94%) had greater than 70% improvement in urinary dysfunction.

 In a 2018 study, SNM was found to improve FI in 59% to 82% of patients with MS.

 A 4-year prospective study found a statistically significant decrease in involuntary stool loss and urge defecation numbers.

 In a retrospective case series study, 60% of patients (15 of 25) reported clinically significant improvement in symptoms of frequency and incontinence, a decrease in the number of catheterizations, and an increase in void volume.

 A multicenter study analyzed therapeutic success and quality of life over 36 months and reported statistically significant improvements in urinary symptoms.

The present review of the literature found generally favorable results for SNM as a treatment for FI and UI in patients with MS. Engeler et al

 reported that SNM treatment had a high success rate after the failure of conservative treatment options. It improves the volume voided, urgency, and urge UI and reduces postvoid residual. These effects were achieved early in treatment and remained stable thereafter.

 found that SNM was a valid therapeutic option in patients with lower urinary tract symptoms due to MS. Their study confirmed a significant decrease in urgency and frequency among SNM patients and an overall improvement in quality of life.

 also determined that SNM is an effective and safe therapeutic option for treating lower urinary tract symptoms in patients with MS. In addition, Worsøe et al

 also documented SNM and its improvement in FI symptoms.

Limitations of this case series include its small size, limited generalizability, limited duration of follow-up, and that MS disability severity was not formally assessed as an independent variable. These would be important factors to include in larger-scale assessments of SNM in this patient population because SNM may not offer the same effectiveness in more advanced cases of MS. Strengths of this case series include its echoing previous findings in the literature and its raising awareness of MRI-compatible SNM as a therapy deserving of more study.

This experience with SNM in patients with MS revealed no adverse events. None of the patients in this series reported difficulty charging the device, but challenges with charging among older patients and increased, approximately 15-year, battery longevity have led us to a default recommendation of the newer, nonrechargeable device. None of the studies before the present series demonstrated adverse events or raised concern of risks that might warrant restricting SNM therapy for patients with MS. Newer SNM devices are fully compatible with 3-T MRI technology, with the recommendation that the SNM device be temporarily switched off during the scan using the accompanying remote control. Given the neurologic mechanism of pelvic floor dysfunction and incontinence in MS, effective therapy may work through a neuromodulatory mechanism.

The published literature reveals no rationale for the CMS and insurers to exclude patients with MS from effective pelvic floor therapy. The severe negative impact of incontinence and the high success at restoring continence and quality of life found in this and other studies of SNM are additional arguments that patients with MS should no longer be excluded from receiving SNM therapy by insurers. Larger-scale clinical assessment is warranted to determine the best candidates and to confirm the thesis that SNM should be considered when counseling patients with MS on treatment modalities and quality of life related to refractory UI and FI.

Sacral Neuromodulation Therapy for Urinary and Fecal Incontinence in Patients With Multiple Sclerosis: Report of 6 Cases and Literature Review

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.

Alexander Musallam, MPH

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