BACKGROUND

People with multiple sclerosis (MS) frequently report implementing dietary strategies as part of their personal wellness programs; however, little is known about the perceived themes of healthy behavior change in people with MS.

METHODS

Semistructured one-on-one interviews were conducted with 20 women with MS enrolled in 2 different restrictive dietary intervention studies and their 18 self-identified support persons consisting of partners and adult children. Interviews were transcribed, coded, categorized, and then grouped into summative themes. The frequency of issues being mentioned as facilitators of or barriers to diet adherence was evaluated to identify possible differences in perceived experiences between women with MS and their support persons during the studies.

RESULTS

Five qualitative themes were identified: (1) personal motivation, (2) diet components, (3) time, (4) support, and (5) resource access. Major facilitators of dietary adherence were positive support from support persons and study staff, access to resources, symptom improvement, and personal motivation. Major barriers included the novelty of the study diet, lack of cooking skills, no change in or worsening of symptoms, lack of diet knowledge, and food preferences and temptations. Symptom severity was more frequently reported as a barrier to study diet adherence among participants with secondary progressive MS.

CONCLUSIONS

Methods to enhance personal motivation and ensure positive support from support persons and study staff may improve study diet adherence. Due to the unique challenges faced by people with MS, future studies should tailor interventions to their unique MS cohort to increase diet adherence.

Multiple sclerosis (MS) is a progressive neurodegenerative disease that can severely impact an individual’s quality of life with many debilitating symptoms.1  Surveys consistently report that approximately half of people with MS modify their diet as a nonpharmacologic method to improve overall well-being and reduce symptom burden.2,3  Consequently, the focus on nonpharmacologic interventions, such as diet and lifestyle, as adjunct therapies to reduce symptom burden has increased.

Emerging epidemiologic evidence suggests that diet quality is inversely associated with risk of relapse and disability among people with MS.46  Similarly, several preliminary trials have shown the benefit of dietary interventions in reducing MS-related fatigue and improving quality of life.710  However, due to the overall lack of scientific rigor in the preliminary trials, the current state of evidence does not support any specific dietary strategies for MS.11  Thus, better-designed randomized trials are needed to determine the efficacy of dietary interventions on MS-related symptoms.

Participant adherence to study intervention diets is an important consideration when evaluating the efficacy of dietary intervention studies. People with MS often experience pain, fatigue, and changes in vision, cognition, and motor function,12  which may present people with MS unique challenges in adhering to dietary interventions. A qualitative interview study by Plow and Golding13  identified symptoms of fatigue and mobility problems as major barriers to engaging in healthy behaviors among people with MS; however, in the same study, improvements in these symptoms were also described by participants as major motivators to engaging in healthy behaviors. Thus, it is possible that disease and symptom severity impacts how people with MS perceive adaptation to dietary interventions.

In agreement with our previous experience, expert recommendations suggest that adaptation of study diets by partners of people with MS facilitates diet adherence and study completion.14  The “we” approach is suggested for people with MS and their partners in coping with MS.15  Neate et al16  reported that partners who engage in healthy behaviors with their spouse with MS feel a sense of “togetherness” and are better able to provide support to their partner with MS. This coengagement in healthy behaviors also leads to increased perceived hope for the future among partners of people with MS.17  In addition to practical barriers to diet adaptation, such as eating out, traveling, and major life events, partners of people with MS report that disease progression is a major barrier because the rewards of healthy behaviors may become less obvious or occur over an extended period.18  Understanding facilitators of and barriers to diet adaptation among people with MS and their support persons may provide important information to better design future clinical trials. Thus, the objective of this study was to identify themes of perceived experiences in adapting to study diet interventions among people with MS and their support persons.

Overview

This is a qualitative descriptive study. Semistructured one-on-one telephone or video interviews were conducted with participants with MS from 2 different dietary intervention studies conducted by our group7,19  and their self-identified support person, defined as any adult companion (partner, family member, friend, adult child) who supported the participant throughout the dietary intervention studies. The interviews were designed to gather details about adherence to the restrictive study diets (modified paleo and low–saturated fat diets, both of which lead to symptom improvement in MS7 ). Both parent trials7,19  and the present study protocol were approved by the University of Iowa institutional review board.

Participants

Participants with relapsing-remitting MS (RRMS; n = 13) were recruited from a cohort of 55 individuals who met the following criteria: completed a trial comparing 2 specialized dietary approaches (modified paleo and low–saturated fat diets) on MS symptoms7  and voluntarily enrolled in a long-term observational follow-up study. Participants were contacted regarding interviews via email and, if they agreed to participate, were asked to nominate a support person. Partners were the preferred support person, but to avoid discrimination against those without partners, friends or other family members were also included. Two participants declined to nominate a support person but were interviewed and included in this study. In all instances, the support person was either a spouse (n = 9) or an adult child (n = 2). In addition, as part of a previous 12-month multimodal safety and feasibility study that included a dietary intervention component, interviews were requested by email from the first 10 participants with secondary progressive MS (SPMS) to tell the study team about participant experiences with the intervention before recruitment of the complete cohort.19  Interviews were completed with participants with SPMS (n = 7) near the end of follow-up during the previous trial, and each participant’s partner was also interviewed. Participants in both studies received dietary education and support from registered dietitians (RDs) or RD-trained study staff. The RDs provided coaching using motivational interviewing and self-determination theory20  to improve adherence to the study diet intervention and reviewed 10% of coaching sessions to ensure fidelity to the dietary interventions.

Interviews

The participants and their support persons were interviewed individually once by authors Cassidy Dean and Samantha Parks for study 1 and by Paul Meirick and Nicole Grogan for study 2. The semistructured interviews were conducted in person (32%), by telephone (15%), or by video call (53%) using (1) open-ended questions regarding attitudes and experiences with food and diets before, during, and after the dietary intervention trials and (2) scaled questions regarding perceived sense of hope before and after the study and perceived adherence to the diet rated on a Likert-type scale. Questions in the semistructured interview guide were based on the primary investigator’s clinical experience and were designed to elicit participants’ experiences that affected their adherence to their assigned diet. Additional questions were developed during interim analyses, allowing us to elaborate on possible themes emerging from the interviews. Interviews typically lasted 30 to 60 minutes.

One-on-One Interview Content

To further elucidate issues related to diet adherence, participants and their support persons were asked about their attitude toward and experience with healthy food and diets before the study to assess their knowledge and skill and how that may have impacted dietary adherence. In addition, they were also asked about previous knowledge they had of the study diets and whether that had any impact on their motivation to adhere to the diet.

Questions regarding their feelings about their (loved one’s) illness before the study and what they expected their (loved one’s) health status to be after another year of MS without the study provided insight into the feelings of each participant and their support person before the dietary intervention. Asking these same questions regarding their feelings after the study concluded provided evidence of the perceived effect of the dietary intervention and the impact that it had on their motivation to adhere to the study diets. The participants were also asked to rate their sense of hope on a scale from 1 (no hope for the future) to 10 (very hopeful for the future) before and after the dietary intervention for a quantitative evaluation. In addition, they were asked to rate their dietary adherence on a scale from 1 (minimally following diet goals) to 10 (meeting all the study diet goals each day) and discuss any challenges they may have faced in meeting the study diet goals, as well as anything that helped them succeed in meeting the goals. Finally, participants in both studies were asked how their respective study could be improved and if there was anything specific that the study team could do or provide that would make it easier to meet the study diet goals each day.

Content Analysis for Interviews

The interviews were recorded and transcribed verbatim. MAXQDA software (VERBI Software) was used to store and organize the data and to facilitate coding. The procedure, reviewed by Graneheim and Lundman,21  was adapted for the qualitative content analysis of the transcribed interviews. The transcripts were independently evaluated to identify codes regarding study diet adherence by 2 investigators (C.D. and S.P.). Any disagreements were discussed until consensus was reached; however, when an agreement could not be reached, discrepancies were settled by a third investigator (T.J.T.). Each code was recorded in a frequency count (ie, how many participants said something consistent with that category). Codes were then condensed and aggregated into content areas describing the specific facilitator or barrier. After final verification, the content areas were deductively grouped together into 2 predefined categories as facilitators of or barriers to diet adherence and then inductively evaluated to identify major themes that prevent or facilitate adherence to study diets as perceived by study participants and their support persons.

The demographic characteristics of the study participants (n = 20 women with MS) from both studies are reported in TABLE 1. Using data obtained from one-on-one interviews of study participants and their support persons, we identified 5 themes that were described as having a major impact on their ability to adhere to their assigned study diet. The themes are (1) personal motivation, (2) diet components, (3) time, (4) support, and (5) resource access (TABLE 2). The following sections summarize each theme using illustrative quotes from study participants and their support persons. Names of participants have been replaced with pseudonyms for confidentiality. Differences in the frequency of facilitator and barrier reports between MS participants and their support persons are given in TABLE S1, which is published in the online version of this article at IJMSC.org.

TABLE 1.

Baseline Demographic and Clinical Characteristics of 20 Women With MS Recruited From 2 Different Dietary Intervention Studies

Baseline Demographic and Clinical Characteristics of 20 Women With MS Recruited From 2 Different Dietary Intervention Studies
Baseline Demographic and Clinical Characteristics of 20 Women With MS Recruited From 2 Different Dietary Intervention Studies
TABLE 2.

Summary of Themes

Summary of Themes
Summary of Themes

Theme 1: Personal Motivation

Participants and their support persons attributed finding an inner source of personal motivation as key to diet adherence; however, the reported sources of motivation (eg, family, physical ability, MS community, etc) varied widely, suggesting that the source of motivation is not the key factor. Participants in both groups described an innate drive to comply with study procedures because they felt a sense of duty to the study or a sense of obligation to the ‘greater good’ of the MS community as their motivation. “I have felt from the beginning that I can’t let [MS] beat me … being a part of the study … knowing that it was for the greater good, was motivation,” said Jill when asked why she chose to participate in the study. Conversely, an inability to find or maintain motivation was a frequently reported barrier, especially among the participants (65%) compared with their support persons (17%).

Improvement in MS symptoms was another frequently reported facilitator of diet adherence. Most participants with RRMS (77%) and all with SPMS noted an improvement in MS symptoms and attributed their perceived symptom improvement as a major motivation to continue with the study diet. Elizabeth said, “After the first couple weeks, I started feeling better and was feeling stronger.” Symptom severity at the beginning of the study was a significant barrier reported by participants with SPMS (43%) but not by participants with RRMS (0%), and overall, study participants reported worsening of symptoms as a barrier more frequently than their support persons (40% vs 11%, respectively). Stacey said, “I was mostly after the physical improvement and there was [no improvement]. I would still be on it 100% if I saw both physical and fatigue improvements.”

Theme 2: Diet Components

Both intervention diets required considerable effort to follow, a major barrier for some participants. When asked about her experience following the study diet, Karen said, “It hasn’t been anywhere near like swallowing a magic pill; it’s a lot of work.” Among the most significant barriers to diet adherence among participants was the novelty of the study diet. The participants indicated significant struggle at the beginning of the diet intervention as they were learning the study diet protocol and how to prepare new foods. “The first week was tough … information overload … I just want to know what to eat and when to eat,” said Rebecca. “Some of the information that is given can be a little, a little daunting to grasp,” echoed Jim, a support person.

Despite all the study participants receiving diet education from the intervention dietitians, learning the study diet was frequently reported as a barrier. Michelle said, “We have the book and know what we’re going to do, but we have no idea how to do that.” In fact, many participants wished they were given more time to adjust before the study truly began. “My house wasn’t prepared for that type of diet to be implemented that day … it should have been a 2-week progression towards the diet,” said Sally. Conversely, perceived previous knowledge about nutrition and its effects on health were reported as facilitators of diet adherence. “The foods were normal … it’s how I eat normally … I know that each component has its own specific task when it comes to giving nutrients and energy and support to my body,” said Elizabeth.

The restrictive diets were perceived as a major burden for several support persons. John stated, “I don’t think food is medicine; I think of it as something that is the highlight of the day so if it doesn’t taste good, I’m definitely not going to do it, even if it’s healthy for me.” Several support persons chose to not follow the same diet as the loved one with MS who was enrolled in the study. “I guess … my desire [was] to have things other than what she wanted. I had a different view of what I should eat and what she should eat,” said Paul. However, a few support persons appeared to enjoy the study diets. Kirk emphasized, “We like fresh fruits and vegetables, [and] the ingredients are pretty good.”

Theme 3: Time

Among the 5 themes identified in this study, participants and support persons alike described time only as a barrier to and in no way as a facilitator of study diet adherence. It was directly mentioned by Ashley that “time was the biggest thing” when asked during the interview what may have hindered her dietary adherence. “It was a lot of work initially because you had to research everything you ate … everything you did,” Ashley continued. The time-consuming aspects of the diet included preparing the food and grocery shopping. Jill said, “You had to spend a lot more time … planning out the meals for the week … [and] cooking.” This point is further highlighted by Michelle, who said, “I really feel like I could have a time and a half job just trying to figure out my food, which is at times overwhelming.” The burden of time spent planning and purchasing food was also noted by support persons. Paul stated, “Grocery shopping was a big challenge because you had to spend a lot more time researching ingredients on your purchases.”

Study procedures were frequently reported as a perceived barrier by study participants (65%), but not as frequently by their support persons (28%). “The data-keeping was a bit overwhelming,” said Rebecca. The burden of food log documentation was also noticed by support person John, who said, “Another barrier is just like [the] documentation part of this diet. Like, knowing what to record or how often to record … it takes so much time.”

Theme 4: Support

Throughout the study, perceived support or lack thereof contributed greatly to participants’ ability to adhere to the diet. It was a challenge for the participants who had family members who were not supportive of them taking part in the study and thus hindered their success. “My husband liked to cheat [on the diet] … if it was just me it probably would have been different … but it’s the family element, both child and husband,” said Elizabeth. In addition, children were frequently reported as a challenge. “My child was preteen … it was hard to bring him along with what I was eating … it was difficult trying to fix him one meal and me another,” said Sally. Ben, a support person, also noted, “When you’ve got kids it’s really tough because then you [have to] cook two separate entrees.”

Alternatively, when support persons assisted in food preparation and household tasks, providing positive support, it facilitated study diet adherence among the study participants. Jennifer said, “My husband does a lot of the chopping of fruits and vegetables to get them ready to grab … he has picked up a lot more things at home that I used to do.” Positive family support was among the strongest facilitators identified. Lexi said, “What made [the diet] easier was that we did it as a family, not just [me] individually.” This is highlighted by support person Kirk, who stated, “Because we were doing the study, we might fall back a few days and then say, ‘Okay, we got to get back on [the diet].’” Study participants more frequently reported support from the study staff (ie, the dietitians) as a facilitator to study adherence compared with their support persons (75% vs 39%, respectively). Carol said, “For me, the biggest perk was being able to work with the [study] nutritionist … if I had any questions, they were answered.”

Theme 5: Resource Access

Access to resources, including online support groups, recipe books, public transit, and well-stocked local supermarkets, was one of the most frequently referenced facilitators. Stacy said, “I did join one of the [online support] groups and we found it’s not as expensive as we thought it would be. … Once you make a couple different recipes, that gives you an idea of the trends and how to cook.” Access to resources was also perceived as a facilitator by Stanley, a support person, who said, “The biggest help was finding [a] more appetizing variety [of] recipe books that were [study diet] friendly.”

Cost was not frequently reported as a barrier to the study diet; however, it was a barrier for some. Stanley, a support person, said, “For a family that has one working parent … financially, I just didn’t feel like I could because it’s kind of expensive.” This was further emphasized by the support person Kirk, “The price of foods, the right … foods is tough, you know, for a family that has one working parent.” Location was another barrier to diet adherence for the participants and support persons who lived in areas perceived to be food deserts. As described by Mike, a support person, “We live in a small town and the grocery store where we live didn’t have a lot of the things that were in the study … and fatigue is a huge issue for [her]. There’s a lot of times where it’s not really safe for her to drive further.”

Hope for the Future

Perceived hope for the future slightly increased after the study for the participants with RRMS or their support persons, and there were larger increases among participants with SPMS and their support persons. On a scale from 1 to 10 (1 = no hope, 10 = extremely hopeful), mean ± SD perceived hope for the future among participants with RRMS was 8.2 ± 2.2 before the study and 9.0 ± 1.9 after the study. Similarly, mean ± SD perceived hope for the future was 6.7 ± 2.2 before the study and 7.7 ± 2.4 after the study for RRMS support persons. Among participants with SPMS, mean ± SD hope for the future was 4.6 ± 1.8 before the study and 7.4 ± 2.0 after the study, and for SPMS support persons, it went from 5.0 ± 1.7 before the study to 7.5 ± 1.9 after the study. One quote from Rhonda, a participant with SPMS, illustrates this change: “I never expected to walk without assistance again [or] be able to finish the training with my dog and walk her further. I mean, I’m babysitting for a coworker now. I never thought I [would again].”

An increased interest in lifestyle modification among people with MS has led to an increased interest in nonpharmacologic interventions among MS researchers. Emerging evidence suggests that lifestyle modification, including diet changes, can improve quality of life in people with MS. However, to develop MS-specific dietary approaches, well-designed studies with adequate sample sizes and high levels of diet adherence are urgently needed.11  The themes identified in this study provide insight into facilitators of and barriers to study diet adherence that can be used by future dietary intervention studies to improve the accuracy and reliability of their results.

We observed that participants often noted the importance of a positive mindset, maintaining study engagement, positive support from family members and study staff, and planning ahead to adhering to their assigned study diet. Having a positive mindset and motivation was mentioned by 100% of participants with MS and 78% of their support persons. These findings are similar to those from Plow and Golding,13  who observed that participants who prioritized diet adherence often felt a sense of duty because of their MS and felt that participating in wellness programs provided them a sense of control over their MS. In this study, support from family and study staff proved to be an invaluable resource, with 80% of participants mentioning positive family support and/or study dietitians as a facilitator. Simultaneous adoption of lifestyle changes is viewed as a method to provide practical and emotional support and increases perceived hope for the future by the partners of people with MS.17,18  In this light, it is alarming that 39% of support persons identified themselves as being guilty of negative support in the present study.

Improving access to study dietitians may additionally help mitigate the barrier of the novelty of study diets and facilitate active dietary adherence. People with MS are likely to prefer making active, shared decisions with health care professionals.22  Study dietitians can help accommodate study participant food preferences and provide diet education to help foster autonomy and desirability, which, in turn, could promote intrinsic motivation to follow the study diet. In the present study, 80% of participants referenced unfamiliarity with the new diet as a barrier to successful adherence. Previous perceived knowledge about diet/nutrition was mentioned as a facilitator to diet adherence by 77% of participants with RRMS and 29% with SPMS. Although it was not frequently referenced, access and cost were significant barriers for several participants. Addressing resource disparities among participants and reducing the cost of study interventions are critical for improving adherence.

People with MS often report symptoms as a barrier to healthy behavior change.13  In the present study, symptom severity at the beginning of the study was a major perceived barrier to study diet adherence for only the participants with SPMS. This discrepancy may be due to the progressive nature of SPMS, which leads to higher symptom burden over time.23  In this study, improvement in MS symptoms was frequently reported as a facilitator of diet adherence among both participants with MS and their support persons. Plow and Golding13  found that engaging in healthy behavior change was viewed as a means to maintain independence for people with MS, and coengagement in healthy behaviors by partners of people with MS increases their ability to support them.16  Taken together, these observations highlight the complex interaction between symptom severity and the desire to engage in healthy behaviors among people with MS.

Limitations

This study has several limitations. First, due to the small sample size and the lack of male participants, these findings have limited application to the entire MS population and need to be confirmed by additional studies. Second, because the data from participants with RRMS and SPMS are from 2 different studies, differences between these 2 groups should be viewed only as hypotheses. Third, there is the potential for selection bias in these results because individuals with particularly extreme responses to the dietary intervention may have been more likely to agree to be interviewed for the present study. Fourth, some of the participants with RRMS and their support persons interviewed had completed the study more than 1 year earlier, which may have impaired recall. Finally, the intervention among participants with RRMS was only 24 weeks, whereas participants with SPMS were interviewed between 26 and 52 weeks into their intervention, and this discrepancy in the duration of the intervention may have caused differences in the perceived outcomes of the study interventions. Nonetheless, this study provides awareness to perceived themes of dietary intervention adherence that may be addressed by health care providers at the time of diagnosis.

Conclusions and Implications

The findings from this study provide insight into modifiable factors that can be used to better design future dietary intervention studies among people with MS. These results suggest that study participants with MS and their support persons perceive many similar themes to study diet adherence, which may improve the ability to engage support persons and ultimately lead to better study diet adherence. Enhancing personal motivation and ensuring positive support from study staff and family members seem to be major opportunities for future dietary intervention studies among people with MS. These interventions may enhance study diet adherence and reduce attrition. In addition, devising strategies to adapt the study diets to the preferences of not only the study participants with MS but also other people in the household, such as spouses and children, may reduce feelings of burden toward the study diet and enhance adherence. The themes of diet adherence identified in this study may be used by clinicians working with people with MS to improve their diet and by future researchers to design more rigorous studies to determine the effectiveness of dietary interventions on MS disease activity.

PRACTICE POINTS
  • » Methods to enhance positive mindset and motivation may improve adherence among people with multiple sclerosis enrolled in dietary intervention studies.

  • » Active support from study dietitians and positive support from family members may additionally improve adherence to dietary interventions.

  • » Researchers and clinicians should be aware of other barriers to the implementation of dietary interventions, such as time, level of disability, access to resources, and the dietary preferences of all members of the household.

We thank the students who supported the parent trials and the present study.

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FINANCIAL DISCLOSURES: Dr Wahls personally follows and promotes the Wahls diet. She has equity interest in the following companies: Terry Wahls, LLC; TZ Press, LLC; The Wahls Institute, PLC; FBB Biomed, Inc; and the website http://www.terrywahls.com. She also owns the copyright to the books Minding My Mitochondria (2nd edition) and The Wahls Protocol, The Wahls Protocol Cooking for Life, and the trademarks The Wahls Protocol, Wahls diet, Wahls Paleo diet, and Wahls Paleo Plus diet (the Wahls elimination diet is not trademarked). She has completed grant funding from the National Multiple Sclerosis Society for the Dietary Approaches to Treating Multiple Sclerosis Related Fatigue Study. She has financial relationships with BioCeuticals; MCG Health, LLC; Genova Diagnostics; and the Institute for Functional Medicine. She receives royalty payments from Penguin Random House. She has conflict of interest management plans in place with the University of Iowa and the Iowa City VA Health Care System. The other authors have disclosed no relevant financial relationships.

FUNDING/SUPPORT: This study was supported in part by the National Multiple Sclerosis Society (grant RG-1506-04312 to Dr Wahls), the Direct-MS Charity of Canada, and University of Iowa institutional funds. The University of Iowa Summer Research Fellowship for Medical Students provided support for Mss Dean, Parks, and Arthofer. Dr Titcomb is a research trainee of the University of Iowa Fraternal Order of Eagles Diabetes Research Center (grant T32DK112751-01) and is supported by the Carter Chapman Shreve Family Foundation and the Carter Chapman Shreve Fellowship Fund for diet and lifestyle research conducted by the Wahls Research Team at the University of Iowa. In-kind support was provided by the University of Iowa College of Public Health Preventive Intervention Center.

Author notes

*CD and SP contributed equally to this paper.

Note: Supplementary material for this article is available at IJMSC.org.

Supplementary Material