Your Patients with Multiple Sclerosis have Set Wellness as a High Priority— And the National Multiple Sclerosis Society is Responding

US Neurology, 2015;11(2):80–6 DOI: http://doi.org/10.17925/USN.2015.11.02.80

Abstract:

Over the past few years, the National Multiple Sclerosis Society (Society) has been analyzing topics of importance to the MS community across a variety of communication channels. The data show a trend toward decreased trust in pharmacologic approaches and increased interest in more holistic approaches to MS treatment. People living with MS want to know what they can do today—particularly related to diet, exercise, and emotional wellness—to feel and function at their best. In addition, they want the support of knowledgeable healthcare professionals who are armed with accurate information about wellness interventions. This article reports the findings and conclusions from a recent meeting convened by the Society, during which clinicians, researchers, people with MS, and Society staff reviewed what is currently known about diet, exercise, and emotional issues in MS; identified key questions to be answered in each of these domains, along with the research gaps and challenges to be addressed to arrive at the answers; made specific programmatic recommendations to ensure that people living with MS are getting the personalized support and information they need to achieve wellness; and determined next steps to move this important priority forward, some of which are already underway.
Keywords: Multiple sclerosis, National Multiple Sclerosis Society, wellness, exercise, diet, emotion, depression, intervention, research, programs
Disclosure: Pavan Bhargava, MD, receives funding from the National Multiple Sclerosis Society through a Sylvia Lawry Physician Fellowship Award. Maura Dunn, MS, and Rosalind Kalb, PhD, have no conflicts of interest to declare. No funding was received for the publication of this article.
Acknowledgments: The authors wish to acknowledge Wellness Meeting steering committee members, Barbara Appelbaum, ACC, MBA, MAT, Barbara Giesser, MD, and Patricia Kennedy, RN, CNP, MSCN, and the work of Dawn Ehde, PhD, Robert Motl, PhD, and Ellen Mowry, MD, who provided literature review and moderated discussions around gaps, challenges, and opportunities in the areas of mood, exercise, and diet for this meeting.
Received: July 15, 2015 Accepted September 17, 2015
Correspondence: Rosalind Kalb, PhD, 290 Sabino Road, West Bath, ME 04530, US. E: Rosalind.Kalb@nmss.org
Open Access: This article is published under the Creative Commons Attribution Noncommercial License, which permits any noncommercial use, distribution, adaptation, and reproduction provided the original author(s) and source are given appropriate credit.

Achieving wellness is a high priority for people living with multiple sclerosis (MS). They want to know what they can do today to feel their best, and whether lifestyle interventions can impact the course of the disease. People with MS are also among the most informed, engaged, and self-advocating patients with chronic illness—proactively seeking information through a variety of channels.1

The National MS Society (Society) has observed trends and emerging topics within the MS community for the past few years. One strategy for evaluating interest in certain topics is by analyzing trends in “conversations” over time. We track topics in traditional media, social media, website traffic, and calls to our Information Resource Center (IRC) on a regular basis. We then mine the data collected to find consistencies and inconsistencies (over time, among channels, between specific populations, etc.), explore the meaning behind trends, and determine the Society’s response.

Trends and Topics in the Multiple
Sclerosis Community
Social Listening

Social listening, which is primarily utilized as a marketing and public relations tool, is the process of identifying and assessing what is being said about a topic, company, individual, or brand on the Internet. Billions of conversations occurring daily—on blogs, message boards, forums, social networks, wikis, microblogs, video sites, online news sources, and more—produce massive amounts of unstructured data. Listening and analytics platforms use keywords to provide structure to the unstructured social data through the use of “smart algorithms.” Essentially, the software transposes specific words or phrases in unstructured data into numerical values that are linked to structured data in a database. The structured data can then be analyzed with traditional data-mining techniques. Social listening provides an opportunity to tap into day-to-day conversations among people with MS in real time, on a global scale— something that is not possible in traditional medical and research settings.

Website Traffic
The Society’s website, nationalMSsociety.org, is an online resource for people living with and affected by MS and healthcare professionals. The site is updated regularly based on research, best practices, and visitor feedback. With more than 16,000 pages of content, the site averages approximately 450,000 monthly visitors, 80 % of whom have MS or have a loved one with MS. Recent usability tests revealed that treating MS, understanding or managing symptoms, and fulfilling financial needs are the top priorities for website visitors.

Call Center Interactions
The Society’s IRC is made up of a team of human services professionals providing intake and assessment as well as information and referral services to people living with MS. The goal for of the IRC is to help each person affected by MS to get timely, accurate information and counsel to manage the disease and maintain and enhance independence and quality of life. In 2014, the IRC received approximately 171,000 calls and 11,500 emails. The most frequent requests include resources for emotional support and wellness, referrals to healthcare professionals with knowledge and experience in MS, and solutions to address the financial impact of MS.

Insights We Have Gained
In spite of dips and spikes over the past few years, interest in wellness strategies for MS symptom management has remained consistently high.

Our preliminary data, including correlations between frequency of symptom- and wellness-related keyword usage, suggest that people with MS are looking to wellness-focused approaches to managing symptoms of MS (see Figure 1). They are trying to solve difficult problems for which we have inconsistent solutions.

Over the past few years, we have seen a trend toward decreased trust in pharmacologic approaches and increased interest in more holistic approaches to MS treatment.

When opinion leaders—such as celebrities and key MS bloggers—begin showing interest in a topic, including wellness strategies, it tends to get more traditional and social media attention.

We have learned from other high-profile topics, such as chronic cerebral venous insufficiency (CCSVI), stem cell treatments, and cannabis, that when patients feel that their healthcare providers and the Society have not adequately addressed their questions, they are more likely to turn to anecdotal information—potentially putting themselves at risk.


Three areas of wellness are of special interest to people with MS. They want to know how they can manage their MS with diet and with exercise (see Figure 2). From our strategic planning outreach activities and our targeted daily listening around symptoms, we also know that people with MS want to learn how to manage mood changes—particularly depression—and develop strategies to achieve emotional wellness. It is interesting to note that information about disease-modifying therapies falls relatively low on the priority list, perhaps because they already have many sources of information about MS treatments.

Doctor–Patient Dialogue around Wellness
Healthcare professionals are also concerned about their patients’ wellness, but face significant challenges in providing guidance or intervention: limited time to cover all that needs to be covered in an office visit, lack of robust data to guide recommendations in the areas of diet and exercise, a don’t ask/don’t tell conundrum in the area of mood disorders, and inadequate mental health resources in many areas of the country for those with significant mood issues.

The result appears to be a fairly significant disconnect between what healthcare professionals are discussing with their patients and what their patients want to hear. In the current healthcare environment, the primary focus during short neurology visits tends to be on disease-modifying therapies, with the result that little time is available to talk about wellness strategies. However, as people develop their MS-management plan, they want to understand the role of wellness behaviors, such as dietary modifications, exercise, stress management, and mindfulness, as well as the role of conventional medicine, including disease-modifying therapies and symptom-management medications and strategies. They are asking whether both conventional medicine and wellness behaviors are necessary, whether wellness strategies could be used instead of medication(s), how the greatest benefits be gained, and how soon.

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Keywords: Multiple sclerosis, National Multiple Sclerosis Society, wellness, exercise, diet, emotion, depression, intervention, research, programs