Discussing Symptom Care, Dietitians’ Roles, and Integrative Approaches in MS

Mona Bostick, RDN, LDN, MSCS

Over the course of 2021, with the lingering effects of the COVID-19 pandemic still permeating conversations in the medical field, care for multiple sclerosis (MS) has been impacted by these effects. Telehealth has had a positive influence in many ways, giving patients with MS access to experts that they may not always consult with, particularly dietitians.

Although the role of diet is sometimes cast in the realm of “integrative” approaches, nutrition and the way patients eat is not an alternative treatment, but rather an integral component of overall health, which is particularly vital for those with MS. Mona Bostick, RDN, LDN, MSCS, founder, Food Matters 365, now MSBites, sat down with NeurologyLive® to discuss this mischaracterization, highlighting the need for registered dietitians to be more consistently included in the comprehensive care model for MS. 

Bostick shed light on the sense of community within the MS field, noting that referrals offer the opportunity for practitioners to learn from one another, while also stressing the need for patients’ diet and eating related concerns to be referred to dietitians. Conversely, she noted the need for dietitians to be educated on how their expertise can be applied for patients with MS to make best use of their knowledge and assist patients in need. 

NeurologyLive®: How have you seen the care of symptoms for MS change and/or shift over the past year?

Mona Bostick, RDN, LDN, MSCS: I've noticed that more people with MS, just like as I imagine, in the broader community, are struggling with the isolation that has come from the pandemic, and that has had a more subtle impact on symptoms of just eating. There is a very emotional component to eating, and I've noticed that has become more prevalent, and that's something I'm being asked about more regularly. I believe that in addition to living with a chronic illness during a pandemic, the pandemic itself has contributed somewhat to aggravating emotional symptoms.

How have lingering effects of the COVID-19 pandemic and the introduction of telehealth continued to impact rehabilitation and symptom care?

I like to think of this as somebody who tries to find the silver lining, and I believe the silver lining to the pandemic is that with telehealth being an available option for people with chronic illness, they have access to dieticians, as well as the rest of the members of their care team via telehealth, which makes it a more inclusive, more accessible way to work with a practitioner. Not only does it make it more convenient for the person seeking information, guidance, or care, but it also gives the myself, the provider, insight into their home situation. There have been occasions where when I'm speaking with somebody via telehealth, their care provider—and I don't mean their spouse or child—I mean the person who's come in to help them with the cooking and things like that, those people have questions that I have been able to respond to. That is something that would never have happened if telehealth had not been an option for the people that I've worked with in that way.

There has been a shift towards more “integrative wellness” types of care—can you speak about the reasons why this is becoming more of a focal point within the MS space?

As a clinical science practitioner, I don't really consider what I do to be an integrative approach. I believe that it is a science. Nutrition is a science and how you eat is not an alternative treatment for disease. It is a part of being healthy, and I find that when we talk about the word 'integrative,' it is often utilized in a way that is not conventional. Integrative wellness, integrative nutrition, things of that sort, these are things that are not precisely defined, so it varies from practitioner to practitioner what information they're providing. 

Integrating nutrition is kind of a mixed bag in that how we eat contributes to our overall health, and up until what I hope to be very soon, dietitians have not been included in the comprehensive care team, which means the other providers on the team have not had the perspective or the voice or the input of the conventionally practicing science-based nutrition professionals, and the nutrition information has come from other sources, perhaps integrative or alternative practitioners.

I really root for dietitians to be included in the care team. It is my hope, though, that the dietitians that are included would be those that practice conventionally and that can guide on people how to safely move into alternative modalities, if that's something that is warranted.

Can you speak to the sense of community within the MS space? Are there aspects of your care model that you have acquired from other clinicians?

If someone is having a nutrition problem, they may come from a multifactorial background. In other words, if I'm speaking with someone, and they have not yet identified that they're having a problem with using their mouth or swallowing, I am absolutely going to make a referral to a speech pathologist in my network. On the other hand, if I'm noticing that someone is exhibiting or practicing disordered eating behaviors, they may not be able to attribute them as disordered eating behaviors or maladaptive coping skills. I may inquire and dig a little deeper, but then also, if they don't already have the services of a mental health professional that is going to understand the role of nutrition, I'm going to make a referral in that way. Just like if somebody is having difficulty with fatigue and moving around their kitchen, I'm going to refer to an occupational therapist. It is my hope that that would be recognized. If nutrition questions come up, I would certainly hope that the patient would be referred to a dietitian, and I believe in the past, there's been some misunderstanding about dietitians not being covered by most insurance services. That is not accurate--dietitian services are covered by most insurances, so I would love it if people stopped trying to answer these questions off the cuff, and recognize that it does play an important role in a person's health.

Have you seen any changes or efforts to include dietitians in the care model more consistently?

Broadly, no, but at the [2021 Annual Meeting of the Consortium of Multiple Sclerosis Centers] in Orlando, I met a dietician who was recently hired in Ohio. Her whole entire job description is to meet the needs and work with people who have multiple sclerosis. I'm sure she's not the only one—it's a big country but, that gives me hope because there's two ways that this can be worked out, right? Depending on the budget of any given practice or facility, you can either hire a dietitian to be a part of the team, or vet a dietitian in the community to make sure he or she understands the challenges of living with multiple sclerosis, [as well as] the nuance and context that is often missing around integrative and alternative nutrition information as opposed to conventional science-based information. That person in the community could also be a referral, as opposed to being in-house.

I know that was an issue a couple of years ago with mental health professionals that weren't always included as a part of the care team, but they became a referral network. That is my hope that moving forward, depending on the situation, there will be dietitians that are specifically educated about multiple sclerosis and can be there to work with people who live with multiple sclerosis.

What the steps then that needs to be taken in order for the inclusion of dietitians to become standard practice?

Currently, at most rehab facilities, there may very well be a dietitian, either on staff or attached to that, but who is only utilized in neurological conditions like stroke, ALS, or Parkinson's, meaning the dietitian is there, and he or she would just need to be informed or educated as to the needs of somebody with MS and how to navigate that. This means that person may already exist, we just need to give them the information they need to comfortably work with the MS population.

An MS center that's attached to a hospital has dieticians in the hospital, they just need to be informed and educated how to best serve the MS population, but out in the community, there are dietitians everywhere. At this point, the obstacle, if you will, is that continuing education hours are expensive and difficult to obtain, and there's not been a reason for a dietician to justify becoming educated and informed on this topic, because they've not yet been welcomed into the comprehensive care team. So, it's that which came first the chicken or the egg thing. I think they need to be welcomed into the team, have their perspective recognized for the value that it adds, and then [we] also find people in the community to add as a referral source, meaning those of us who have this information need to provide the information so that people will be comfortable. 

A quick example of that is that doctors go to medical school, they go through all the different disciplines. If a neurologist did an OBGYN rotation in medical school, but then you go to that doctor now who's been practicing neurology for 37 years and say, "Will you manage my high-risk birth?" That that doctor is not going to have that comfort level because what he learned in medical school may not be as fresh in his mind. So, a dietitians have a very broad knowledge of nutrition, they just may not yet have that specific MS component to it. Just providing that information will increase the comfort level so that they will be able to serve the needs of the folks with MS. 

I have had a referral from Illinois, a woman who was a professional athlete, but had MS. The dietician she was working with, who was a sports dietitian, that's her training—and that requires extra training—she didn't feel comfortable working with this person because of MS, thinking that somehow MS was going to supersede whatever advice she gave as a sports dietitian, and that's just not accurate. Broadly speaking, multiple sclerosis is not discussed in our education and training, so that's the obstacle.

Is there anything else you would like to add?

I believe [the shift towards integrative wellness] exists precisely because dieticians have not been included in the care team. With MS being such a disease that steals control over the things you thought you had control over, when alternative practitioners are promising to heal, beat, reverse, or give you that control back, the vulnerability that MS presents is going to make someone take a risk on that. It's important to know that nutrition and what you eat plays an important role in your overall health, but it doesn't offset demyelination. The nuance and context around what food can do is missing, I think, a lot of times in the messages of these integrative and alternative practitioners, and I find that to be disconcerting because there is a vulnerability to the MS population, for sure.

Transcript edited for clarity.