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

There are approximately 1 million adults in the United States with multiple sclerosis (MS). Persons with MS are interested in diet as a second-line therapy for improving MS symptoms and disease progression. Examination of desired resources regarding diet among persons with MS is necessary for supporting behavior change.

Twenty-five adults with MS completed 1-on-1, online semistructured interviews. An inductive, 6-phase, semantic thematic analysis was applied to identify themes associated with participant preferences for dietary behavior change.

The research team crafted 4 key themes from the data that encompassed participants’ desired resources for dietary behavior change. Theme 1, MS-specific evidence, involved the need for clear information about the impact of diet regimens or specific foods on MS. Theme 2, dietary guidelines, was related to guidelines provided by a reliable source such as a registered dietitian. Theme 3, behavioral supports, underscored the need for support for behavior change, including accountability, self-monitoring, motivation, habituation, and incremental changes. Theme 4, diet resources, highlighted tangible resources for supporting dietary change, including recipes, food lists, meal services, or games.

This study provides a foundation for guiding dietary interventions for persons with MS that incorporates their needs and preferences and could improve their overall health. Such dietary change can be facilitated by theory-based behavioral interventions that incorporate behavior change techniques such as self-monitoring and goal setting for supporting behavior change.

The authors thank the participants in this study for their time and the insights that made this research possible.

 The authors declare no conflicts of interest.

 This work was supported, in part, by the Eunice Kennedy Shriver National Institute of Child Health and Human Development of the National Institutes of Health (grant F32HD101214) and the Healthy Aging through LifesTyle (HALT) Research Center, which was supported by the National Multiple Sclerosis Society (grant 000518032).

 The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

There are an estimated 1 million adults in the United States and 2.8 million adults globally with multiple sclerosis (MS),

 a disease of the central nervous system wherein immune-mediated inflammation causes demyelination and transection of axons and results in hallmark debilitating outcomes such as mobility impairment, cognitive dysfunction, and fatigue.

 The pro-inflammatory nature of MS has prompted interest in lifestyle approaches that may be anti-inflammatory as second-line therapies for managing disease manifestations, in conjunction with first-line pharmaceutical interventions such as disease-modifying therapies.

 A recent study indicated that persons with MS are interested in wellness approaches, particularly regarding diet, to manage the disease, and diet is the most frequently searched wellness strategy on the internet by persons with MS.

The National Multiple Sclerosis Society (NMSS) recently convened a Wellness Research Working Group that reviewed the literature on diet in MS and provided guidance for further research.

 The NMSS Wellness Research Working Group concluded that the study of specific dietary regimens and how they affect MS symptoms and disease progression is in its infancy.

 Research regarding diet and MS has largely focused on inflammation, given the pathogenesis of MS, and examined the associations among saturated fatty acids, leptin, cytokines, and, more recently, dysbiosis of gut microbiota with MS manifestations.

 This evidence has generated increased research regarding the effects of specific diets, vitamins/minerals, essential fatty acids, and antioxidant supplements in MS.

 One ongoing quandary remains: there is currently no class I evidence from randomized controlled trials of the benefits of any specific diet in MS. The provision of a behavioral knowledge base that focuses on the dietary information needs and preferences of persons with MS is required before implementation of any dietary intervention and for the purposes of enhanced health and wellness and long-term adherence.

The tradition of qualitative research is an important approach to understand diet in MS. Qualitative methods gather first-hand, lived experiences and opinions such that interventions can be designed that more closely meet the needs, wants, and desires of persons with MS.

 A recent study explored perceptions about dietary information among persons newly diagnosed as having MS

 and added further support to the necessity to generate a focused line of research on diet. Study participants requested further research given the perceived incompatibility or lack of general dietary advice considering disease seriousness (their first theme) that can underpin participant-reported engagement in self-experimentation with dietary approaches for managing MS (their third theme).

 This is but 1 example demonstrating that a focus on diet is a key priority for persons with MS

 and that qualitative inquiry is a meaningful approach to capture the needs, wants, desires, opinions, fears, and experiences regarding diet among persons with MS. Previous qualitative research further highlights a current lack of resources for supporting changes in healthy eating behaviors.

 An in-depth understanding regarding desired resources for supporting future dietary change from a behavioral perspective would complement adjacent research examining biological changes and specific dietary regimens for improving outcomes among persons with MS.

One primary research question put forth by the NMSS working group was, “What are the optimal ways to promote the adoption and maintenance of specific dietary regimens?”

 Qualitative inquiry is an ideal approach for providing a foundation that addresses this question because it allows a research team to identify barriers to and facilitators of adoption and maintenance of behavior change from the viewpoint of the target population. To that end, the present study adopted qualitative inquiry and examined the desired resources for supporting dietary changes in persons with MS. The overarching goal of this research involved the provision of guidelines for behavioral interventions promoting healthy eating based on the preferences of persons with MS.

This study was approved by the University of Alabama at Birmingham institutional review board. An inductive, exploratory qualitative design was used to explore desired dietary resources of persons with MS.

 This study was underpinned by an interpretative paradigm framed by ontological relativism and epistemological subjectivism. As such, we perceived reality as multiple and subjective, depending on each individual participant, and each participant’s “truth” or reality as unique to them but equally valid.

 We further perceived that the creation of knowledge was a cooperative effort between ourselves and the participants, and this knowledge creation was influenced by the experiential, historical, political, and cultural background of each individual’s lived experience. All members of the research team have previous experience designing and conducting qualitative studies that examine health behaviors in diverse samples of persons with disabilities, including MS. The first author (S.L.S.) previously conducted a qualitative study of exercise preferences among wheelchair users with MS that led to the development of a behavioral intervention. The second author (E.V.R.) is a leading expert in qualitative methods and disability studies who has led more than a dozen individual qualitative studies regarding physical activity and wellness in samples with MS, spinal cord injury, and other disabilities. The third author (R.W.M.) is a leading expert on wellness in persons with MS who has implemented qualitative methods in research for the past decade.

Participants were recruited using purposive sampling methods involving convenience and maximum variation strategies. Regarding convenience strategies, we contacted individuals who expressly desired information about future research conducted by the team. To honor this request, we used a maximum variation technique by designing a call-to-research flyer that was purposefully distributed among individuals with a wide range of clinical and demographic characteristics, such as MS type and duration, socioeconomic status, location, and race. The rationale for this approach was to capture as wide a range of opinions and desires for dietary resources as possible. The email invitation was distributed among 40 potential participants, and 26 expressed interest. The inclusion criteria were (1) age 18 years or older, (2) confirmed diagnosis of MS, and (3) willingness to take part in a recorded interview.

Participants were emailed instructions for the online interview platform and an information sheet before the interview session that explicitly stated what was being asked. All interviews began with a discussion regarding the information sheet, and verbal informed consent was received before interviews began. Participants were further informed that they could terminate the interviews at any time and sit in a location of choice, thereby aligning with best practices for facilitating comfort and convenience.

Data were collected through online, semistructured, 1-on-1 interviews via video teleconferencing software (Zoom; Zoom Video Communications Inc) licensed by the University of Alabama at Birmingham. This software was chosen given the higher levels of security afforded with university-sponsored accounts that require the use of waiting rooms and passwords for entering meeting rooms and an individual option for use of a camera. In addition, the software allows users to download recordings directly to a password-protected computer as opposed to the Kaltura Cloud. The research team examined previous literature regarding dietary behaviors in persons with MS and then created and refined an interview guide. Online interviews were chosen for numerous reasons. First, this allowed researchers to interview individuals from a wide geographic range, capturing not only those local to the research laboratory but also individuals from across the United States. This allows for a cultural snapshot of desired resources within this country. Second, online interviews are a preferred method of data collection among persons with MS because they can reduce the fatigue, pain, and stress associated with travel.

 Third, this method ensured the safety of both the researcher and the participant not only regarding travel but also because these interviews were conducted in April and May 2020, during COVID-19 restrictions.

The semistructured approach was taken to allow participants freedom to discuss experiences and opinions important to them while allowing interviewers/researchers to ensure that areas of interest that spoke to the research questions (ie, desired resources for nutrition) were meaningfully captured.

 The interview began with general introductions (ie, grand tour) wherein researchers inquired about demographic and clinical characteristics. Participants were then asked about personal informational needs for dietary behavior change, for example, “What information do you want to know about nutrition and MS?” We further inquired about resources that participants would need to support changes in diet, for example, “What would help you incorporate nutrition into your management plan for MS?” and “How would you change your diet? What tools or resources?” The other questions asked are provided in 

, which is published in the online version of this article at ijmsc.org. The semistructured design allowed flexibility for participants when providing specific information regarding previous experiences with various diet regimens and future diet preferences and providing rich, in-depth data.

The first and second authors conducted the interviews, and they engaged in critical reflection after each interview was conducted. All the interviews were deidentified before transcription. Audio data were transcribed by a third-party transcription company (Rev.com).

To ensure rigor and trustworthiness throughout the research process, we adopted a relativist approach, which stipulates that rather than a universal list of criteria applied to all research, there are nuances in research that must be appreciated and different standards of quality depending on the purpose, methods, and analysis of each approach.

 This approach to rigor aligned with our philosophical underpinnings regarding multiple subjective realities co-constructed between the participants and the researchers and allowed us to choose markers of quality that both aligned with the objectives for the research and ensured the scientific quality of the methods.

 We chose the evaluative markers of substantive contribution, rich rigor, critical friends, and naturalistic generalizations, which we selected from Tracy

 and the ongoing list from Smith and Caddick.

 We ensured substantive contribution by identifying gaps in participants’ knowledge regarding diet information and support among persons with MS. Enhancing knowledge about what persons with MS need and want regarding diet can inform future research and highlight ways to help improve wellness in this group. We sought rich rigor by using an appropriate sample, applying rigorous data collection and analysis methods, and using applicable theoretical constructs to support meaningful, important findings. Related to this, we used critical friends to help problematize conclusions and act as sounding boards to alternative ideas. In the context of this study, the first author led the data analysis effort and created initial codes and themes, which were critiqued by the second and third authors. Furthermore, the first, second, and third authors have complementary expertise in diet, qualitative methods, and MS, respectively, and were able to support each other throughout the process as well as challenge each other’s thinking. Finally, we aspired for naturalistic generalizability whereby the findings of this work may resonate with other readers who experience the same things (ie, persons with MS searching for diet information).

 We did this through rich descriptions and quotations from participants as well as deliberately choosing a sample from across the culturally diverse United States.

We conducted an inductive, semantic, thematic analysis to identify themes associated with participant preferences for dietary behavior change. Specifically, the methods were inductive wherein the themes were determined by the data and semantic wherein codes were applied based on the explicit, surface-level data. We followed the 6-phase guidance for thematic analysis outlined by Braun et al.

 Phase 1 involved the first and second authors becoming familiar with the data through conducting interviews and rereading transcripts. During this initial immersion phase, the first author submitted audio for transcription within 24 hours of an interview and read each transcript upon receipt from the transcription service. Both the first and second authors independently open coded all the data using Microsoft Word (Microsoft Corp) during phase 2 and noted resources needed and interest in future dietary behavior change. For phase 3, the first author proposed 4 themes that manifested from coding that were then reviewed by all the authors in phase 4. All discrepancies were addressed through debate and discussion among the research team. Phase 5 involved the final naming of the 4 themes and descriptions and an iterative review to ensure that they aligned with the data. Phase 6 was a comprehensive report and summary, included in the Results and Discussion sections that follow.

Of the 26 individuals who expressed interest, 25 were screened for the inclusion criteria and provided informed consent. Participant characteristics are provided in 

. The mean (SD) participant age was 56.5 (8.7) years (range, 42–74 years), and most participants were female (n = 23) and self-identified as White (n = 24). Participants had a mean (SD) disease duration of 16.4 (8.6) years (range, 3–38 years). Twelve participants reported a diagnosis of relapsing-remitting MS and 12 participants reported a diagnosis of progressive MS (5 primary and 7 secondary); 1 participant did not report a clinical course.

The first author conducted 15 interviews and the second author conducted 10 interviews. Overall, 1328 total minutes of audio data were collected, with a mean (SD) interview length of 53 (9) minutes (range, 40–79 minutes).

From the data, 4 key themes were crafted that encompassed participants’ overall desired resources for dietary behavior change: (1) MS-specific evidence, (2) dietary guidelines, (3) behavioral supports, and (4) diet resources. 

 provides a detailed representation of the 4 key themes and codes.

Participants reported a desire for clear, MS-specific evidence regarding the impact of diet regimens or specific foods on MS. Participants referenced symptoms that might be linked with MS-specific evidence for diet and food consumption. For example, participant 22 mentioned inflammation and fatigue with diet: “I wanted to know what increases inflammation and what reduces it and what keeps my energy up. I saw a study where intermittent fasting, like you fast a day then you eat the next day, is supposed to help with some kind of inflammation. And wanted to pick the doctor’s brain. But yeah, that’s basically it nutrition-wise, what’s going to make me feel like I want to get out of bed and do things and not take 3 naps a day.” Further participants stated that a lack of evidence regarding diet and health undermined the possibilities of engaging in effective dietary behavior change. For example, participant 2 said, “It’s not as big a factor because I haven’t read anything that says ‘You should eat this’ or ‘Don’t eat that.’ But thus far, no one has tied anything dietary to what’s good for you or bad for you in terms of my health.” Participant 4 shared this concern regarding the lack of MS-specific evidence but went further to state a desire and need for published media to disseminate dietary information: “I would just want to, what we’re were talking about earlier, just more specifics on what to eat, what not to eat. Different things that would help us as far as diet and nutrition. Like I said, I’m a sponge, so I love to read, and I love to read helpful...I like to read things that will help me, I like to learn, so anything that would be published would be good.” Of note, however, participant 5 reported experiencing issues regarding conflicting dietary evidence through disseminated information: “Yeah, that’s the problem because one day coffee’s good for you, and the next day coffee’s bad for you. Then they go back, ‘Well it’s good for you.’ There’s too many different opinions about what is good for you and what is bad for you.” Overall, there was a general call among participants for evidence from credible, widely available resources regarding diet and foods specific to managing MS.

Participants expressed a critical need for dietary guidelines from a reliable source such as a registered dietitian. Participant 11 directly mentioned a desire for guidelines: “I would kind of like to have better guidelines and more things spelled out for what we need to eat or things to avoid.” One of the primary foci of such guidelines was portion sizes. For example, participant 19 stated, “Probably basic information, portion sizes. Sometimes it’s hard for me, I know with my age and my height and my activity level, I probably should be eating about 1100 calories a day. That’s not a lot. What foods should I put that in so that I’ve not gobbled up all my calorie content in breakfast and lunch, stuff like that.” Participant 20 took this 1 step further and proposed a need for guidance regarding protein: “Another question I had is: how much protein am I supposed to eat?” Participants expressed an additional need for guidelines designed by reliable sources. For example, participant 15 said, “I have found people respond best if you, whatever body of authority guidelines, and then they say, “Eat this. Do this.” I find people respond more to that. Or at least I have over the years, right? Yes. So I’d like the National MS Society or whoever university guidelines.” The overarching suggestion from participants was dietary guidelines that would promote healthy eating and were disseminated via credible sources.

Some participants expressed a need for guidelines but were uncertain about whether these were achievable and would be aligned with personal preferences. For example, participant 9 stated, “I’ll just eat the best way I can and still be happy. There’s no way I’m going to eat a plant-based diet. There’s no way I’m going to eat just fruits and vegetables. I’m never going to be a vegan. To say, oh yeah send me a piece of paper that says eat 3 or 4 vegetables a day, I’m not going to do that. I mean, I’ll be right up front with that.” Participant 15 provided further insights regarding the presentation and specificity of guidelines that can address resistance: “Five fruits a day or whatever. Not even servings. Forget that because they don’t get what a serving really is. You should eat 5 fruits a day. You should eat 3 vegetables. Very specific, but none of those words because people just turn off. They’ll tune out.” In addition, guidelines need to be readily available, as expressed by participant 11: “I don’t want to have to do the research looking for things, going to different sites, trying to find something then just finding generic information. I want more specific guidelines.” Overall, participants provided insights to help guide the presentation of dietary guidelines that could be integral for promoting uptake of the desired MS-specific diet, outlined in theme 1.

Participants highlighted behavioral supports as a primary resource that would promote dietary behavior change. Behavioral supports involve constructs and strategies that directly support modification of behavior, including strategies such as motivation, self-monitoring, habituation, incremental changes, and accountability. Motivation was a primary subtheme reported by participants; for example, participant 16 said, “I noticed if you don’t have that hope or desire, you can have all the resources in the world and nothing is going to change.” Participant 8 highlighted that motivation varies among individuals, “Yeah. It’s hard to figure out what motivates, I guess everyone motivates differently.” Therefore, identifying approaches for enhancing motivation may be a primary consideration for understanding adoption and maintenance of dietary behavior change.

Several participants underscored the utility of self-monitoring for dietary behavior change using mobile applications such as MyFitnessPal, which can aid in raising awareness regarding diet composition. Participant 2 specifically referenced experience with self-monitoring: “Well it’s like with MyFitnessPal, diet is what you put into the diary. And nutrition is actually the nutrition button that you can look at and see what you’re getting. And I’ll stop a second here, but going back to MyFitnessPal, it can really open peoples’ eyes. Oh my goodness.” An additional behavioral component of interest among participants was habituation. Participant 1 reflected on experience with dietary behavior change and habituation: “I think it helped to break the habits because that’s the one thing that you’re struggling with. People get habitually...I don’t know. Whatever it is that they’re used to having all the time and they habituate that and so they need to break that habit.”

Participant 4 mentioned a focus on incremental, realistic changes: “If it was an easy change and something that I could incorporate without an awful lot of trouble, yes. If it’s a major change, I doubt that I would do it.” This collectively suggests that self-monitoring and realistic goals that align with individual habits and routines may be primary considerations to support dietary behavior change.

Participants expressed a need for supportive accountability to adopt dietary behavior change. Participant 7 was interested in peer-facilitated supportive accountability: “So you could go onto it, like fitness buddies, people with MS, and then see if you could find a match that you could support each other with as far as fitness goes and healthy eating and encourage it. There’s no such thing for MS, and I would love to see something like that, especially for those of us that live alone.” Participant 22 mentioned an interest in support that was not authoritative: “I mean support would be good. Dictating, I’d be like yeah, bye-bye.” Some participants had the opportunity to meet with a registered dietitian or nutritionist and had positive experiences. For example, participant 24 said, “Prior to moving to [excluded], my primary care physician asked if I wanted to meet with a nutritionist before moving. And so she introduced it to me, to MyFitnessPal, and I found it so easy to use that I did it for a while.” Overall, participants had an interest in various options for accountability facilitated by peers or health care practitioners in a supportive and nonjudgmental manner.

Participants identified a need for tangible resources for dietary behavior change, including recipes, food lists, menus, food preparation services, meal services, and technology-based knowledge translation. For example, participant 4 provided comprehensive insights that encompassed how these resources would complement each other: “I like to see recipes. Lists of good foods, lists of foods that are not, to stay away from, different meal plans, suggestions, but I like easy, so recipes that might be easier than...I don’t want something that has 15 items in it of food. I’d rather have something that would be easy to prepare, but good for you. Maybe different suggested menus.”

Participant 10 aligned the utility for a small set of recipes and menus for individuals with MS who experience brain fog: “Look, this is what you shouldn’t be eating anymore because it’s a fog mind issue. Let’s find you 2 weeks of meals that work for you, so you have 2 weeks, you’re only cooking 1 meal twice in a month, so you can plan ahead, you can get it done. You know it’s good every time, and that’s what she did for me and that helped so much, so much, because now I have made the meals.” Participant 20 reiterated a need for recipes that included a reasonable number of items and suggested resources be widely available online: “Probably something online that could be printed off or saved or pulled back up that would be quick and easy tips or recipes. But then I looked at 1 recipe that looked really good until I saw it had 16 ingredients.” Therefore, participants were keenly interested in meal preparation resources that ensured variety, but with a reasonable number of ingredients, and that could be feasibly implemented.

Some participants were interested in meal services, such as participant 2: “I’m probably more into you can have someone cooking and pay for the food service. And I’d probably look pretty heavy into that. Somebody or hire a chef or something. Or not, I would do that, but hire a meal person like Jenny Craig.” Participant 23 expressed an interest in prepared meals but noted issues with them aligning with dietary needs: “Well, I tried to do one of the meal planning things, where they would just prepare the meals for you. You just go pick up. I tried to do that. But they did a lot of tomato-based things. So it’s kind of every, pretty much all of their meals, or a lot of their meals were tomato-based. So I couldn’t eat them. I try to limit my pork and beef intake, so it just kind of made it really challenging to do. So I thought that was a waste of my money.”

Importantly, cost is a significant barrier for many individuals with MS, as highlighted by participant 15: “So money is a barrier.” Symptoms can be an additional barrier for food preparation. Participant 17 mentioned issues with vertigo and using knives: “Struggling with my vertigo lately, and so I shouldn’t use knives when I’m struggling with my vertigo.” Collectively, there is a growing industry in prepared meals in the general population that may be a resource leveraged by individuals with MS.

Participants mentioned delivery of resources via the internet, such as recipes. One unique idea was presented by participant 8 regarding gamifying knowledge translation: “And then I just thought of something weird, but people like to play games and maybe there’s some kind of game that could be developed so they could learn about nutrition.” Such innovative approaches for disseminating information can be incorporated into future nutrition programs and resources.

To our knowledge, this is the first study using qualitative methods to examine resources and preferences for dietary change in persons with MS. This study was motivated and informed by seminal and guiding papers on the topic as well as a strong interest in diet among persons with MS.

 Participants expressed a pressing need for a foundation regarding the impact of diet on MS and guidelines for optimal diet for persons with MS. In addition, desired resources for initiating diet in MS aligned with previous qualitative inquiry, particularly the need for autonomous approaches that allow for individualization and self-experimentation.

 The findings from this study are summarized in Figure 1 and provide a roadmap regarding necessary steps for adopting dietary behavior change as a second-line therapy among persons with MS.

The 4 themes identified in this study align with social cognitive theory (SCT) behavior change principles. Indeed, SCT posits that knowledge regarding benefits and health risks is a precursor of health behavior change (ie, theme 1: MS-specific evidence).

 Outcome expectations for health behavior change are critical in persons with MS, and findings from this study highlight a need for evidence regarding the impact of diet on debilitating MS symptoms. Relatedly, participants expressed a need for dietary guidelines for persons with MS (theme 2) that can guide goal setting, self-monitoring, and action planning. There are physical activity guidelines for persons with MS,

 and, therefore, dietary guidelines for persons with MS that are based on evidence regarding the impact of diet on MS may be appropriate. Participants expressed a need for behavioral supports and strategies for dietary behavior change after the establishment of evidence and dietary guidelines. Participants highlighted several components that align with SCT behavior change principles, including motivation, goal setting, self-monitoring, and supportive accountability (theme 3: behavioral supports).

 Tangible resources such as recipes, food lists, menus, food preparation services, and meal services were also identified as tools necessary to support dietary behavior change. Taken together, behavioral supports and diet resources can be skillfully delivered via theory-based behavioral interventions to support dietary change. These theory-based behavioral interventions are distinct from randomized controlled trials testing different dietary recommendations or prescriptions because the underlying challenges associated with dietary behavior change must be addressed using a strong behavioral medicine evidence base.

The internet has been identified as a primary source of information provision among persons with MS, and study participants expressed an interest in internet resources; therefore, this is a ripe opportunity for dissemination of evidence-based internet resources to support dietary behavior change.

 Such resources could be delivered through the NMSS website, which is often one of the first places persons with MS seek information regarding second-line therapies.

 In addition, diet resources could be delivered by neurologists or health care providers given recent evidence establishing that neurologists are a preferred source of information among persons with MS.

 However, a recent qualitative study illuminated barriers to dietary behavior change cited by neurologists that included juggling conflicting diet evidence and acknowledging the risks and benefits of diet.

 The authors of that study concluded that neurologists might meet the current needs of patients by promoting the benefits of national dietary guidelines, such as the Dietary Guidelines for Americans in the United States, and being prepared to explain the potential risks of specific diets.

 Another recent study highlighted that persons with MS are skeptical about the appropriateness of national dietary guidelines and want specific dietary guidelines for MS, which might lead to resistance or skepticism in discussions with neurologists or other health care providers.

 Therefore, we assert that the use of national dietary guidelines can provide a temporary solution, and this study provides guidance for areas of future research that build on a strong theoretical foundation. Such studies would investigate diet in MS, provide clear guidelines for persons with MS, and create programs that include behavioral supports and resources that support dietary behavior change.

The present study is not without limitations. Online interviews were necessary given COVID-19 restrictions; however, this method reduces the interviewer’s ability to discern nonverbal cues, which can provide rich information. The research team used convenience sampling methods, and this yielded a sample that was diverse in terms of geographic area, sex, and disability status; however, the age range of participants was 42 to 74 years, and further research is warranted among younger adults with MS. In addition, the time since MS diagnosis ranged from 3 to 38 years, and, given a growing interest in behavior change immediately after diagnosis, focal inquiry regarding dietary behavior change preferences is warranted among those recently diagnosed. The current paucity of evidence regarding diet in MS presents a challenge to providing clear recommendations for neurologists and other health care providers based on the results of the present study; however, a leading group of experts in wellness research for persons with MS provided some guidance for the promotion of a healthy diet, such as a focus on consumption of whole foods and attention to food labels.

We conclude that diet is consistently a second-line therapy of interest among persons with MS that requires further research regarding biological mechanisms in conjunction with the establishment of guidelines and the creation of tangible resources. These resources might be ideally delivered via behavioral interventions that address motivation and implement evidence-based behavior change techniques such as self-monitoring and goal setting. Collectively, the findings from the present study provide a foundation to guide future research in dietary interventions for persons with MS that incorporates their needs and preferences and could potentially improve their overall health and quality of life.

Desired Resources for Changing Diet Among Persons With Multiple Sclerosis: Qualitative Inquiry Informing Future Dietary Interventions

Upper extremity strength and function are rarely assessed in routine multiple sclerosis (MS) care. This study aimed to evaluate hand muscle strength and functionality in individuals with MS and investigate correlations with upper extremity function, cognitive status, health-related quality of life (HRQOL), and balance.

A cross-sectional study was conducted with 45 consecutive individuals with MS between the ages of 18 and 65. Upper limb motor strength was evaluated using a hand grip strength dynamometer. Upper limb functional capacity was assessed using the Nine-Hole Peg Test (9HPT) and the Duruoz Hand Index (DHI). Balance, coordination, and falls were measured with the Berg Balance Scale (BBS), Falls Efficacy Scale (FES), and the 30-Second Chair Stand Test (30CST). Cognitive function was evaluated using the Montreal Cognitive Assessment instrument and the Symbol Digit Modalities Test. Level of HRQOL was assessed using the self-reported 54-item MS Quality of Life-54 questionnaire.

Out of the 45 participants (80% women, mean age 36.6 ± 8.6 years), higher hand grip dynamometer measures were strongly correlated with better DHI, 9HPT, BBS, FES, and 30CST scores. In the regression analysis, a 1-unit increase in dynamometer measures led to a 0.383 increase in overall HRQOL score.

This study demonstrates that increased hand grip strength (HGS) is associated with better hand functionality, balance, and HRQOL in individuals with MS. It provides evidence to support more systematic measurement of HGS in the care of people with MS.

From the Bursa Yüksek İhtisas Training and Research Hospital, Bursa, Turkey (MS, MKA) and the Department of Neurology, Faculty of Medicine, Sakarya University, Sakarya, Turkey (AT). 

 The authors do not have any financial or nonfinancial interests directly or indirectly related to the work submitted for publication.

Multiple sclerosis (MS) is a central nervous system disease characterized by various neurological disabilities resulting from progressive inflammatory and neurodegenerative processes.

 People with MS often experience symptoms that significantly impact their quality of life (QOL), including muscle weakness, sensory deficits, and cognitive impairment.

Approximately 66% of individuals with MS experience upper limb motor impairments, greatly affecting daily activities.

 Hand dysfunction, along with fatigue, ambulation, and cognitive decline, has been associated with increased unemployment, which highlights the importance of addressing these deficits in MS.

 Despite the disabling effects and negative impact on QOL, little is known about the exact frequency and severity of upper extremity dysfunction in individuals with MS. Additionally, accurately assessing upper limb movements is challenging due to their inherent variability.

Hand grip strength (HGS) is a reliable measurement of upper extremity muscle strength to determine functional capacity. It reflects the force generated from the combined contraction of extrinsic hand muscles.

 HGS measurement is recommended as a modality to assess muscle strength and is the simplest method for evaluating muscle functions in clinical practice.

 Previous studies have shown that increased HGS is strongly associated with preserved mobility, functional status, higher levels of daily living activities, and decreased disability.

With an incidence of 40% to 65% in individuals with MS, cognitive impairment is reported to be a predictor of long-term disability. The severity of cognitive decline appears to be related to patients’ ages and levels of physical disability, and certain cognitive aspects can predict functional status in MS.

 Impaired balance is also a disabling symptom that negatively impacts independence and autonomy, leading to falls and injuries. It can be present even in the early stages of the disease course, sometimes even in the absence of physical disability.

 People with MS tend to have lower health-related quality of life (HRQOL) levels.

 Muscle weakness, balance and gait abnormalities, fatigue, and other functional deficits significantly contribute to their lower HRQOL.

This study aims to evaluate HGS and hand functionality in individuals with MS and investigate their correlations with cognitive status, HRQOL, and balance states in these individuals.

This cross-sectional analytical study was conducted in the neurology department of Bursa Yüksek İhtisas Education and Research Hospital (Bursa, Turkey) from February 1, 2020 to May 1, 2020. Ethical approval was obtained from the institutional research committee, and all subjects provided written informed consent.

Physical characteristic data obtained included age, gender, time since diagnosis, and current treatments. Disability was evaluated by a neurologist using the Expanded Disability Status Scale (EDSS).

 The participants had a confirmed diagnosis of relapsing-remitting MS according to the revised McDonald criteria

 and an EDSS score between 0 and 5.5. Participants were between the ages of 18 and 65.

Exclusion criteria were current pregnancy, having an MS relapse within the preceding 3 months, sensorial problems not caused by MS, unilateral sensory perception loss, upper motor neuron injury (eg, stroke survivors), history of peripheral neuropathy, and upper limb orthopedic limitations that could interfere with study procedures.

All assessments were performed by the same physician in a quiet, well-illuminated room.

Upper Limb Functional Capacity: Hand Grip Strength 

Upper limb motor analysis was assessed in a seated position with the patient's feet on the ground. The HGS of the dominant hand was measured by the Jamar Plus+ Digital Hand Dynamometer (Sammons Preston). Since the reliability and validity of the Jamar dynamometer has been evaluated as high, it has been considered a gold standard in the assessment of grip strength.

 Hand dominance was determined by asking the patients which hand they used for writing. The test was performed in a seated position with the shoulder of the tested arm adducted, the elbow flexed at 90°, and the forearm and wrist set in neutral position. Grip strength tests were performed 3 times with 1-minute intervals between each, and the average of the 3 measurements was calculated.

The Nine-Hole Peg Test (9HPT) and the Duruoz Hand Index (DHI) were used to evaluate upper limb functional capacity. The 9HPT is a well-known, standardized, quantitative test of upper limb function. It has a strong test-retest reliability for individuals with MS.

 The test was performed in a seated position with the dominant hand. The chronometer was started as soon as the patient touched the first peg. The chronometer was stopped when the last peg hit the container.

The DHI is an 18-item self-report questionnaire designed to evaluate activity limitations of the hand. It was first developed for individuals with rheumatoid arthritis.

 Questions are grouped in 5 domains: in the kitchen (8), dressing (2), hygiene (2), in the office (2), and other (1). The patient is instructed to answer each question in terms of the level of difficulty they experience when completing various tasks without help from another person or assistive device. Individual items are scored on a 6-point Likert scale where 0 is 

. The 18 individual scores are summed to obtain a composite score. The total score ranges from 0 to 90 with higher scores indicating poorer hand functioning.

The Berg Balance Scale (BBS), Falls Efficacy Scale (FES), and the 30-Second Chair to Stand Test (30CST) were used to assess balance, coordination, and falls. The BBS has been validated in several populations and cutoff scores have been established to identify the risk of falls and the need for a gait aid for ambulation.

The FES questionnaire has 10 listed activities with responses on a Likert scale from 1, 

 at performing the listed activities, to 10, 

l. The total FES score was obtained from the sum of these 10 items, ranging from 10 to 100.

The 30CST was used to evaluate leg strength and endurance. This test was developed to overcome the floor effect that older adults expereinced with the 5 to 10 repetitions of the Sit to Stand Test.

The self-reported 54-item MS Quality of Life questionnaire (MSQOL-54) supplements the generic 36-Item Short Form Health Survey with 18 disease-specific questions that measure social and cognitive functioning, sexual functioning, pain, energy, health anxiety, and overall quality of life. Aggregate scores are generated for mental HRQOL (MCS-54) and for physical HRQOL (PCS-54). The standardized scores range from 0 to 100 and higher scores indicate better HRQOL.

The Montreal Cognitive Assessment (MoCA) and the Symbol Digit Modalities Test (SDMT) were used to evaluate participants’ cognitive function. The MoCA is a 30-point test that assesses several cognitive domains, including visuospatial/executive functions, naming, memory, attention, language, abstraction, and orientation.

 is a digit substitution test that examines attention, visual scanning speed, perceptual speed, and tracking and is very sensitive to various neurological disorders. It has become the most commonly used neuropsychological test of processing speed in MS.

Statistical analyses were carried out using the SPSS/PC software (version 23.0). Descriptive statistical methods (frequency, percentage, mean, standard deviation, median, min-max) were used to assess the study data. The Shapiro-Wilk test confirmed that the data showed normal distribution. The independent samples 

 test was used to compare quantitative data according to groups. The relationship between the variables in the patient group was examined by the Pearson correlation. Analysis of categorical data according to groups was performed using the χ

 test. Stepwise multiple regression analysis was used to evaluate the relationship among factors. Significance level was taken as 

A total of 80 persons with a diagnosis of relapsing-remitting MS (RRMS) for at least 1 year were screened for eligibility. Of the 80, 35 were excluded from the analysis (32 patients did not meet inclusion-exclusion criteria and 3 declined to participate). Of the 45 persons included, 36 were women (80%); the mean age was 36.6 ± 8.6 (range 21-57) years. The mean disease duration was 7.1 ± 6.1 (range 1-23) years. Forty-two (93.3%) patients were using an MS-immunomodulating therapy: 12 glatiramer acetate, 12 interferon, 16 oral therapies (fingolimod, teriflunamid, dimethyl fumarate), and 2 ocrelizumab. The average EDSS for the RRMS group as a whole was 1.9 ± 1.3 (range 0-5.5).

All parameters were evaluated with the Mann-Whitney U test. The median value of the 9HPT repeated was 22.1 (16.8-21.11) for women and 25.6 (19.7-35.1) for men and showed a significant difference according to sex (

 = .027). The median physical health value was 57.5 (20-100) in women and 90 (35-100) in men, thus, it was significantly higher in men (

 = .048). There was a significant difference between the sexes in terms of sexual function, with a median value of 66.7 (0-100) for women and 100 (8.3-100) for men (

 = .018). The satisfaction in sexual function median was 50 (0-100) for women and 100 (0-100) for men (

 = .046). When the mean value of general QOL was compared by sex, men (72 ± 15) had significantly higher results than women (57.8 ± 18.8) (

 = .041). Women with MS generated less force (45.6 ± 21) than men (70.5 ± 26.7) as measured by the dynamometer grasp performance, demonstrating a strength difference with a moderate effect size (

 = .04). Other variables did not differ according to sex (

Hand grip dynamometer measurements were strongly correlated with DHI (

 = .251) scores. Additionally, the SDMT was significantly correlated with 9HPT (

 = .003) scores, but not with grip strength measurements (

Dynamometer measurements were found to be statistically significant in predicting overall QOL, with each unit increase resulting in an increase in overall QOL score of 0.383 (

 = .001, SI = 0.104, R2 = 0.523 Stepwise Method).

The present study was conducted to draw attention to the hand muscle strength and functionality in people with MS and to investigate its association with balance, cognition, and QOL. We found strong correlations between hand grip dynamometer measures and hand functionality tests (DHI, 9HPT), as well as balance measures (BBS, FES, 30CST). Regression analysis revealed that higher dynamometer scores were significantly correlated with better QOL.

Previous studies have shown that upper limb motor function is significantly affected by the level of disability in people with MS.

 In the Dubuisson et al study, 95% of people with MS considered upper limb function to be more important than lower limb function.

 There are still no standardized, uniform disability scales to evaluate upper limb functionality in people with MS.

 In our study, we used the DHI and 9HPT to assess upper extremity functionality and the Jamar Plus+ Digital Hand Dynamometer to evaluate HGS. Although the HGS test was originally designed for patients undergoing hand surgery, it has been shown to have a strong association with decreased physical fitness and reduced muscle strength.

 We observed that increased HGS was strongly linked to better upper extremity function and balance but not with cognitive status and disability scores. It was positively correlated with QOL.

As reported in previous studies, people with MS generally exhibit lower HGS due to motor weakness.

 It has been demonstrated that a change of 5.5 kg (12 pounds) or more in hand grip strength and 20% or more in the 9HPT falls beyond the range of day-to-day variability and reliably indicates a true change in functionality for people with MS.

 Similar to our study, research has also shown that a deficit in hand grip strength negatively impacts QOL and leads to subsequent dependence for those with MS.

 A study by Aristotelous et al also showed that hand grip strength was not associated with cognitive performance, but was linked to HRQOL, supporting our findings.

 While most studies have focused on evaluating lower extremity strength due to its impact on patients with mild disability, our study highlights the growing importance of upper extremity strength in the later stages of MS, especially when patients require walking aids.

 However, we believe that the earlier stages of the disease are more appropriate for evaluating upper limb strength and functionality. Our study also demonstrates that hand function or upper limb functionality constitutes a separate disability area that is distinct from the EDSS, which can significantly affect QOL and merits further investigation in future studies.

Cognitive impairment has been reported in up to 65% of individuals with MS,

 and in our study, cognitive status was significantly correlated with hand functionality and balance tests, but not with hand muscle strength, similar to the study of Aristotelous et al.

 Previous literature suggests that increased functional capacity is linked to better cognition, possibly due to increased blood flow to the brain, improved cardiometabolic health, and reduced chronic inflammation levels.

 necessitating further studies with larger MS populations, especially focusing on upper limb function evaluations.

Both the mental and physical components of HRQOL are reported to be negatively affected in people with MS.

 Reduced HRQOL was associated with fatigue, depression, and disability in a previous study.

 In addition, cognitive decline was shown to negatively affect HRQOL independent of physical disability.

 Consistent with previous studies, higher disability scores indicated lower sexual functions, satisfaction with sexual function, overall QOL, and physical health composite scores in our study. Increased HGS and younger age indicated a better QOL, as expected.

Some limitations should be considered when interpreting our results, including the cross-sectional design, which limits conclusions about the direction of the association and precludes any inferences of causality or temporality. The study sample consisted of people with MS, so it may not fully represent the entire MS population. Low sample size and inclusion of only ambulatory persons with an EDSS score of up to 5.5 were other limitations.

This study highlights the importance of hand muscle strength and functionality in individuals with MS and its correlation with their cognitive status, balance, and HRQOL. Enhancing hand functionality and muscle strength can significantly impact independence, daily activities, and QOL for people with MS. Loss prevention and early restoration of hand function should be emphasized before the onset of significant morbidity. Further investigations are necessary to identify the most useful hand functionality or muscle strength test as an outcome measure in clinical trials of neuroprotective or neuroreparative therapies in MS. 

Hand Grip Strength as a Predictive Tool for Upper Extremity Functionality, Balance, and Quality of Life in People With Multiple Sclerosis

Decreases in mobility, quality of life (QOL) and cognition are commonly seen in people with multiple sclerosis (MS). Physical therapy (PT) and exercise have been shown to improve many symptoms in ambulatory individuals with MS; however, evidence in nonambulatory people with MS is lacking. Dalfampridine is a US Food and Drug Administration-approved medication for MS that treats impaired ambulation by enhancing nerve conduction. To our knowledge, no study has examined the combined effect of PT and dalfampridine and very few studies have examined dalfampridine's effect on function in individuals with more progressive disease. The purpose of this study was to examine the effectiveness of PT combined with dalfampridine or a placebo on function, QOL, and cognition in nonambulatory individuals with MS. In addition, we explored the benefits of PT in all participants to increase the extremely limited research in this population.

Adults with MS were randomly assigned to receive dalfampridine (n = 13) or placebo (n = 14) for 12 weeks in conjunction with PT treatment 2 times a week. Function, QOL, and cognition were assessed at baseline, 6 weeks, and 12 weeks.

There was a significant time × group interaction for the Multiple Sclerosis Quality of Life-54 favoring the placebo group. Both groups significantly improved on the 9-Hole Peg Test (left arm only), sitting lateral reach (right), transferring from wheelchair to mat, and repeated sit to stand.

The addition of dalfampridine to physical therapy did not improve function, QOL, or cognitive processing speed. Importantly, this study demonstrated an overall benefit in function and QOL with physical therapy 2 times a week for 12 weeks for nonambulatory individuals with MS.

From the Department of Physical Therapy, D’Youville University, Buffalo, NY, USA; and the Department of Neurology, Jacobs School of Medicine and Biomedical Sciences, University at Buffalo, Buffalo, NY, USA. 

Lacey Bromley, PT, DPT, PhD, NCS, MSCS, Department of Physical Therapy, D’Youville University, 320 Porter Ave, Buffalo, NY 14201; 

This study was envisioned by the late Susan E Bennett. She believed that physical activity would benefit every patient regardless of disease status. Acorda Therapeutics, Inc, provided the funding to complete this protocol. No conflicts of interest exist.

: Preliminary findings from this study were presented at the at the Consortium of Multiple Sclerosis Centers Annual Meeting; May 28-31, 2014; Dallas, Texas.

Multiple sclerosis (MS) presents in individual patients with a variety of clinical manifestations that can impact functional mobility. Substantial progress in treatment of the disease has significantly reduced relapse rates and improved disability outcomes. With the availability of more than 25 disease-modifying therapies time to walking limitation can be delayed for up to 20 years

 and life expectancy has steadily increased.

 Nevertheless, a sizable number of patients, especially those with progressive subtypes, advance to nonambulatory status.

Preserving mobility is consistently ranked as the most important factor impacting quality of life (QOL) in people with MS regardless of disability level or disease duration.

 A strong correlation exists between impaired mobility and the capacity to live independently, complete activities of daily living (ADL), and participate in individual and community-based life roles.

 These limitations can severely decrease QOL in people with MS.

Another concerning and prevalent symptom of MS is cognitive impairment. It is estimated that 34% to 65% of people with MS are affected by cognitive decline; individuals with progressive forms of the disease fall toward the higher end of that range.

 Research suggests that cognitive processing speed, memory, and learning are the faculties most impacted by the MS disease process.

 Slow worsening on the Symbol Digit Modalities Test (SDMT) has been correlated with a decline in cognitive processing and gray matter volume loss due to neurodegeneration.

Physical therapy (PT) and general exercise are well established interventions to preserve mobility and improve QOL in ambulatory individuals with MS.

 In addition, cognitive changes, common in MS, may be impacted by exercise, although more studies are needed to draw definite conclusions. Evidence suggests that physically fit individuals with MS have less gray matter atrophy and, as a result, better cognitive function than their counterparts with MS who are less physically fit.

 Growing evidence from both mouse and human studies shows that exercise impacts the central nervous system by decreasing neuroinflammation and improving both neuroprotection and axonal health.

Effects of Physical Therapy and Dalfampridine on Function and Quality of Life in Nonambulatory Individuals With Multiple Sclerosis: A Randomized Controlled Trial

James B. Lewin, PharmD

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