Highlights from the 2017 Joint ECTRIMS-ACTRIMS Meeting

MSParis2017 was this year’s joint meeting of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) and the Americas Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS). Each year, ECTRIMS hosts the world’s largest annual international conference devoted to basic and clinical research in multiple sclerosis, and every three years, ECTRIMS and ACTRIMS come together for a joint meeting.

MSParis2017 was the 7th joint meeting of these two leaders in MS treatment and research, taking place October 25-28, 2017 in Paris, France. More than 10,000 researchers, neurologists, and other MS professionals gathered to share the latest advances in MS research during the past year. With 70 scientific sessions and more than 2,000 abstracts submitted, all of the topics cannot be covered in this highlights article. However, the studies to follow represent some of the more intriguing and important of those presented at the conference.

Disease-Modifying Therapies

The Impact of Disease-Modifying Therapies on MS

Disease-modifying therapies (DMTs) for MS have been available for 25 years, with the arsenal of treatments continually expanding. It is well-established that DMTs decrease new lesion formation as shown on magnetic resonance imaging (MRI) and new MS relapses. Despite this fact, the true impact of the DMTs on the amount of disability that a person may develop is unknown. This is because MS is a condition that spans decades, while formal studies often last only two or three years. Database studies that follow individuals with MS over time can help in delineating the long-term effect of the medications.

MSBase is an international registry that follows people with MS to try to understand the MS disease course. MSBase researchers used available data to examine the relationship between treatment and disability outcomes. First, they identified all people with MS in the database who were followed closely after their first clinical presentation and who had greater than one year of follow-up, for up to 22 years. Then they correlated disability outcomes to whether the person with MS was on a treatment or not. They factored in possible confounding issues, including age, sex, pregnancy status, and recovery after a relapse.

The researchers presented data from 2,194 persons with MS. Of this group, 81 percent were diagnosed with relapsing-remitting MS (RRMS), and 10 percent having converted to secondary-progressive MS (SPMS). They found that when individuals with MS were on treatment, they had a 40-percent less chance of having disability progression compared to when they were not on treatment. Also, they had a 40-percent higher chance of disability improvement when on treatment. Although cohort studies (where researchers observe participants for an extended period of time) have limitations, they can give important information that is unattainable through shorter and more specific clinical trials. This study provides further evidence for the use of disease-modifying therapies to minimize disability accumulation over time for people with MS.


Interferons were the first class of medications that were approved for MS. They offer a very good safety profile, although the side effects are not tolerable for some individuals. Plegridy® (peginterferon beta-1a) is the most recent interferon to be approved by the United States Food and Drug Administration (FDA). It differs from other interferons in that a process called “pegylation” of the interferon molecule allows it to be given only once every two weeks by subcutaneous injection, versus other DMT subcutaneous injections ranging from once daily to three-times per week. While it is given less frequently than other interferon preparations, the studies that led to its approval showed that its effectiveness is similar to other interferons.

In a study presented at MSParis2017, data from real-world use of Plegridy were announced. Sixty Swedish MS Centers contributed data from 286 persons with MS who were started on Plegridy and followed for an average of 11 months. In total, 108 participants did not stay on the Plegridy (54 percent because of adverse events and 24 percent because of sub-optimal efficacy). A total of 49 percent of the participants did not have a relapse, and only 4 percent were reported to have a relapse. However, complete relapse data were not available on the other 47 percent. Real-world studies provide different and useful information about MS treatments. While this study supported the use of Plegridy, it also highlighted the fact that side effects can be significant and effectiveness can vary, thus limiting its use in a broader population.

Another study regarding interferons looked at a post-analysis of the REFLEX study. The REFLEX study was a comparison of Rebif® (interferon beta-1a) given three-times weekly or once weekly via subcutaneous injection, versus placebo, after the first demyelinating event. Data presented showed that enhancing lesions on MRI at a baseline scan were correlated with relapses occurring sooner than for individuals who did not have active MRI lesions at baseline. People who did have active MRIs and were taking Rebif either three times a week or once weekly experienced a longer time until their second clinical event than participants in the placebo arm (who were not receiving an active medication). This analysis showed once again that people with active MRIs have a higher risk for continued MS activity than those without, but that early treatment with a disease-modifying therapy can significantly decrease that risk.

Glatiramer Acetate

Copaxone® (glatiramer acetate) is one of the oldest MS medications. Originally approved by the United States FDA (Food and Drug Administration) in the mid-1990s, two generic versions of this medication have since been approved within the past three years. This medication remains an important option for treatment, given its long-standing track record that includes very good efficacy (how well the medication works) and very low risk for side effects and adverse events. Currently, two formulations of Copaxone have been approved for treatment: a once-daily 20-mg subcutaneous formulation and a three-times-per-week 40-mg subcutaneous formulation.

Researchers from Mapi Pharma conducted a small trial of yet another formulation of Copaxone, a one-a-month depot injection. Depot injections are created to last longer in the body through manufacturing processes that allow the medication to be released more slowly. In this trial, 25 people with relapsing-remitting MS who were taking Copaxone were switched to an 80-mg monthly dose (12 people) or a 40-mg monthly dose (13 people). During the six-month study, no relapses were recorded; this was compared with two relapses in the 12 months prior to the start of the study. Additionally, 95 percent of the participants had stable MRIs during the study. While no serious adverse events occurred, injection-site reactions were more common in the 80-mg group. Further studies need to examine whether the once-a-month formulation is equivalent to the currently approved Copaxone doses.


Every MS medication that is approved for MS has been shown to significantly decrease the development of new MS lesions in the brain as well as reduce the frequency of MS relapses. Most of the MS lesions that are found with routine surveillance are in the white matter of the brain. One of the reasons that the focus has been on white matter previously is that standard MRIs more easily detect these changes. However, it is thought that progressive MS is more related to lesions and atrophy (the shrinking of tissue or reduction in cells) of the gray matter. Therefore, it is of high interest to MS specialists and researchers to understand if the MS medications also impact gray matter.

One study presented at the conference looked at the effect of Gilenya® (fingolimod) on gray matter by following 37 people taking Gilenya versus 40 people who were treatment-free for two years. The study found a lower percentage of people with new cortical lesions (located in the outer layer of the brain) in the treatment group (13.5 percent versus 89 percent). They also found less volume loss in multiple areas of the brain, including the thalamus, caudate, and hippocampus. Along with being linked to progressive MS, these areas are thought to be critical to cognitive function. Thus the prevention of atrophy in these structures may in turn lead to preserving cognition and potentially preventing progressive disease. The “Percentage of Brain Volume Change” (a measure of change in the entire brain) was also significantly less in the Gilenya group. These data support the fact that Gilenya does have an effect in decreasing the loss of gray matter over time.


Aubagio® (Teriflunomide) is a once-daily oral disease-modifying therapy that has been approved for relapsing-remitting MS. People with MS who participated in the key trials that led to Aubagio’s approval have been followed since that time in extension studies. Results from the extension of a previously reported phase II trial of Aubagio were reported. A total of 172 patients were followed for up to 14 years. Disability scores were low at the beginning of the trial and remained low. During the continuation of the study, 63 percent of the participants had stable or even improved disability scores. Though the sample size was small, this study provides data to support that Aubagio is a good long-term treatment option for some people with MS.


The TOP (TYSABRI Observation Program) study is a 10-year observational study of people with MS receiving Tysabri® (natalizumab) for their MS treatment. Study investigators presented data from the TOP study that analyzed outcomes in people with MS who continued on Tysabri versus those who were switched to oral or injectable medications. They found that compared to 2,466 people who received Tysabri continually for a mean time of 5.5 years, individuals who were switched to oral or injectable treatments after two years on Tysabri had 2.2-times the risk for relapse when they were switched to oral medications, and three-times the risk of relapse when placed on injectable treatments. People with MS who were started on oral treatments greater than 12 weeks after their last Tysabri dose had a significantly higher risk for relapse than those who started less than 12 weeks after discontinuing Tysabri.

These findings from TOP emphasize the risk for increased disease activity in people who are switched from Tysabri to an oral or injectable disease-modifying therapy. However, it is important to note that after two years of treatment with Tysabri, the risk of progressive multifocal leukoencephalopathy (PML), a potentially fatal infection of the brain, increases for a portion of the individuals taking this medication. Therefore, the decision to continue on Tysabri versus changing to a different treatment option needs to made, with much attention to the risk and benefit of the switch.


Lemtrada® (alemtuzumab) has been FDA-approved for the treatment of relapsing-remitting MS since 2014. Lemtrada is dosed by intravenous infusion daily for five days in the first year, and then daily for three days in the second year. Participants were then monitored, with the option for re-treatment if a sign of new disease activity appears. The trials that led to the approval of Lemtrada showed a potent effect with treatment. Researchers have continued to evaluate the people who participated in these initial trials through extension studies, which have given useful information about the use of Lemtrada over a longer time period.

Multiple studies were presented at the ECTRIMS-ACTRIMS Meeting that provided updates to the Lemtrada extension study data. An example of these data includes a seven-year follow-up of 321 persons with MS who were in the CARE-MS I trial. Investigators reported at year seven that 59 percent of these participants did not require re-treatment beyond the first two doses. In this setting, 68 percent of individuals did not have new MRI disease activity and 91 percent had no new enhancing lesions. The rate of brain atrophy was also slowed, and this effect remained at year seven. Clinically, the relapse rate remained very low at 0.13 per year at year seven. Investigators also found that 78 percent of the participants had stable levels of disability, including 37 percent who had improvement in disability levels since the study began. No new safety risks for Lemtrada were identified in this year-seven data. These extension data add to the available evidence that Lemtrada is a good and durable option for some individuals with RRMS.

Experimental Treatments

Autologous Hematopoietic Stem Cell Transplantation

Hematopoietic stem cells from the bone marrow are the common precursor cells from which both red and white blood cells originate. Autologous hematopoietic stem cell transplantation (AHSCT), which uses stem cells from one’s own system, requires multiple steps. First, the stem cells, which continually circulate throughout the bloodstream, need to be collected. This is done by filtering the person’s blood. The stem cells are collected and saved through this filtering process, while other cells – especially the white blood cells that are responsible for MS attacks – are removed. The stem cells are set aside and preserved, while a wiping out or “ablation” of the immune system occurs, typically with high-dose chemotherapy.

This intensive course of chemotherapy destroys most blood cells as well as the bone marrow, where the blood cells are formed. Once completed, the patient’s own hematopoietic stem cells can be transplanted back into the blood to rebuild the immune system. AHSCT is often thought to “reset” the immune system, returning it to its original purpose of guarding against infection and away from inappropriately attacking itself.

Australian researchers presented a study of AHSCT that began in 2010. A group of 35 individuals with MS who previously had experienced continued disease activity while on two other MS treatments (given at different times) underwent AHSCT. The study participants were followed for an average of 24 months. Similar to previous trials of AHSCT, after the procedure, researchers reported that new MS disease activity in study participants was minimal. Progression did not occur in 89 percent of the participants, while 94 percent were relapse-free and 91 percent had no new MRI lesions. Additionally, 37 percent of the participants in the trial showed disability improvement that was sustained for greater than six months. No unexpected toxicities were reported. This study adds to the literature supporting AHSCT in MS. Similar to previous AHSCT trials, this study was small and open-label. Larger, randomized trials are necessary to understand the true impact of AHSCT on MS compared to currently available DMTs.


Mavenclad® (Cladribine Tablets) is an oral chemotherapy medication that has been used as a cancer treatment, and more recently re-evaluated as a potential treatment for MS. In August 2017, Mavenclad was approved for use in the European Union to treat MS, and in December, was approved in Canada. Mavenclad is still considered an experimental MS treatment in the United States. This DMT is unique in that it is an oral treatment that is dosed based on a person’s weight. Half of the dose is given over a two-week period during the first year, with the second half of the dose repeated in year two. A previously reported trial of Mavenclad versus placebo, the CLARITY trial, found Mavenclad to be effective in reducing new relapses in individuals with relapsing MS.

Researchers presented a post-study analysis of the CLARITY trial to further examine the proportion of study participants defined as having High Disease Activity (HDA) that achieved No Evidence of Disease Activity (NEDA) in the Mavenclad group versus placebo. NEDA is a measure of MS-disease control. It was defined in this study as having no new relapses, no MRI activity, or no signs of progression. People with high disease activity at baseline are at higher risk for suboptimal control of MS after starting an MS treatment, and therefore it is important to understand how a medication impacts this subgroup of people.

The analysis found that the Mavenclad group was less likely to have new relapses or new MRI lesions during the CLARITY trial. Furthermore, the entire Mavenclad group was 4.46-times more likely to achieve NEDA during the trial than the placebo group. Mavenclad appears to be an effective treatment option for MS, and this study provided new information regarding the likelihood for NEDA in both the overall treatment population as well as the High Disease Activity subgroup.

High-Dose Biotin

Versus placebo, high-dose biotin was previously reported in a small phase III trial of people with progressive MS to decrease the level of disability. However, a larger study is needed to understand if this B-complex vitamin does have this effect, and currently, a large, randomized trial is underway to examine this question. In the interim, because biotin is thought to be safe and is available through compounding pharmacies, it has been prescribed by many MS specialists.

Researchers from Italy reported on 41 individuals with progressive MS who received high-dose biotin in their clinic. In this group, 39 percent were diagnosed with primary-progressive MS and 61 percent were diagnosed with secondary-progressive MS. Individuals were followed on biotin for an average of 13.7 months. During this time, 12 relapses occurred in nine of these participants, two of which had no history of a relapse. Additionally, seven of the participants had new MRI activity. The relapse rate in the year before treatment with biotin was 0.1 relapses per year; on high-dose biotin, this figure rose to .27 per year. In terms of disability, in those who were treated for longer than 12 months, one participant had disability improvement, 17 remained stable, and 10 showed worsening. This was a single-center open-label study, and although it does raise concerns that high-dose biotin may provoke new and unexpected disease activity in progressive MS, the findings from this small study are not conclusive.

Results of the current phase III randomized trial will be important for understanding the true effect of high-dose biotin in progressive MS. Furthermore, the study will allow for a more comprehensive look at the risk for continued disease activity. Until results are available from the larger study, the smaller study serves as a caution toward the use of high-dose biotin outside of the clinical-trial setting.


Ozanimod is an investigational medication for relapsing-remitting MS. Ozanimod acts at the sphingosine 1-phosphate 1 (S1PR1) and 5 (S1PR5) receptors. This mechanism of action differs slightly from the approved DMT Gilenya, which acts primarily at the S1P1 receptor alone. While S1P1 modulation is thought to bring about restriction in the movement of active lymph cells toward their target tissue, S1PR5 is thought to activate specific cells within the CNS that may aid in remyelination. Ozanimod is being studied for use in multiple conditions, including relapsing multiple sclerosis, ulcerative colitis, and Crohn’s disease.

Researchers presented data from two large phase III trials: SUNBEAM and RADIANCE Part B, both of which evaluated ozanimod in relapsing-remitting MS, and both tested ozanimod against Avonex® (intramuscular interferon beta-1a). SUNBEAM was a one-year trial and RADIANCE Part B was a two-year trial. The primary endpoint of both trials was the annualized relapse rate (ARR); study investigators also looked at MRI measures.

The results presented showed that ozanimod had a significant effect on decreasing the relapse rate when compared to Avonex in both trials. Furthermore, MRI measures were significantly better in the ozanimod groups. Also of importance is the fact that ozanimod significantly slowed the loss of brain volume compared with Avonex. Adverse events in the trials were low. No serious infections occurred in the treatment groups and no significant difference in cardiac events was found between the two treatments. Given these trial data, ozanimod holds promise to be a new option for MS treatment that is effective, with favorable risk and side-effect profiles.

Gut Microbiota

The microbiome refers to the diverse array of bacteria that reside inside the body, mainly in the gut. In recent years, microbiome research has begun to shed light on the possibility that differences may exist in the microbiome of individuals with MS compared to people without MS. Although intriguing, it remains unknown if these differences are directly linked to the development of MS in an individual.

One study presented at ECTRIMS reported results of 42 people with MS. Of this group, 23 were reported to have active disease at the time of sample collection, while 19 were stable. The samples were compared to specimens from healthy donors. Researchers found that a strain of bacteria named sutterella wadworthensis was more prevalent in the stable MS group. In the active group, three types of bacteria, bacteroides fingeoldii, ruminococcus lactaris, and eubacterium ramulus, were the most prevalent. Although more work needs to be done to confirm and understand these findings, this study suggests that a microbiome “signature” may exist in people with MS during times of activity or stability, and this may help to predict the MS-disease course.

A second study in this area looked at the correlation between the gut microbiome and the risk for relapse in pediatric MS. Seventeen children with MS were studied for up to 42 months (mean time of follow-up was 19.8 months). During the follow-up period, researchers reported a correlation between the risk for relapse and the gut bacteria’s expression of certain genes related to tryptophan metabolism, biotin metabolism, and flavonoid biosynthesis. When age and exposure to medication were factored in, flavonoid biosynthesis was still significantly associated with new disease activity. Although preliminary, this study also suggests that markers may be found in individual people that may allow for prediction of future relapse.

Another study in the microbiome was reported in which individuals with MS were given a probiotic supplement named VSL3. For two months, seven people on glatiramer acetate and two people not taking a DMT were given a probiotic supplement and were compared to 13 controls who also had MS. Stool and blood samples were collected before, during, and after the treatment. Researchers found that there were changes in the blood that indicated decreased inflammation during the probiotic treatment. However, after the treatment was discontinued, an increase in the inflammatory cells was detected. Furthermore, the investigators also found a decreased expression of certain anti-inflammatory genes during the treatment phase. This study was a small, exploratory study. Although the study investigators did find some changes that suggested that administration of a probiotic may lead to anti-inflammatory changes in the body, larger studies are needed to understand whether a true role exists for probiotic supplementation in the treatment of MS.

Symptoms and Symptom Management

Fatigue and Sleep Apnea

Fatigue is a very common symptom in people with MS. Although the cause of MS fatigue is poorly understood, it is well-known that other co-existing medical issues may increase levels of MS fatigue. Obstructive sleep apnea (OSA) is a sleep condition that results in disordered breathing and lower oxygen levels during the night. Previously, studies have shown that people with MS who have OSA also have increased levels of fatigue. Researchers presented a study that evaluated the prevalence of obstructive sleep apnea in people with MS. They identified individuals with MS who experience severe fatigue and poor sleep, and then evaluated them with a sleep study. A total of 74 people with MS who fit the study criteria were enrolled, and of these 74 participants, 54 were found to have OSA. This study highlights the need for MS specialists to consider OSA as a potential contributing factor to fatigue in people with MS, especially those with complaints of sleep disturbance.

A Potential Treatment for MS Fatigue

Although fatigue is the most commonly reported symptom for MS, treatment options are limited. Cognitive therapy, exercise, and certain medications have been shown to benefit some, but not all, people with MS who experience MS fatigue. A novel strategy for fatigue management is the use of a treatment called transcranial direct current stimulation (tDCS). This is a treatment that uses a small electric current to stimulate specific brain regions. In a study reported at the ECTRIMS-ACTRIMS Meeting, 27 people with MS were randomized into a treatment or a sham group. The participants in either group were unaware of whether they were receiving the treatment or the placebo. The treatment was given at home with follow-up visits done in the clinic. Study investigators found that a significant decrease in rates of fatigue occurred with the active treatment group in comparison to the sham group. This study is attractive in that tDCS is a safe treatment that can be administered in the home. Although larger studies need to be done in the future, tDCS is an exciting potential future therapy for MS fatigue.

PT for Balance Issues

A large portion of people with MS report decreased balance, which in turn can significantly impact gait and the ability to function. Although physical therapy is often prescribed for balance issues, little is known about its true ability to alleviate the symptoms. Researchers presented a study of 50 people with MS who reported balance issues. After five months of physical therapy sessions given three-times-per-week, they found improved scores on three balance scales. A statistically significant decrease in the number of falls was also reported. This study provides evidence for the use of physical therapy in people with balance issues.

Abdominal Massage for Constipation

A large proportion of individuals with MS report constipation or other bowel dysfunction. Bowel symptoms can have a negative impact on quality of life, and also can affect overall health. A study of 191 people in the United Kingdom who experience constipation was conducted to evaluate the difference between traditional medical advice to decrease constipation, versus advice plus abdominal massage. Participants in the group assigned to abdominal massage were given instruction on proper technique as well as a DVD; standard information was also given to the control group. After 24 weeks, both groups reported a decrease in bowel symptoms. However, more improvement was seen in the abdominal-massage group. At week 24, 66 percent of individuals were continuing to do the massage, spending an average of 3.2 hours per week on the procedure. In summary, abdominal massage may be helpful for MS constipation. However, it is a relatively time-intensive technique, which may limit its overall use.

Fampridine for Upper-Extremity Function

Ampyra® (fampridine) is an FDA-approved medication for the treatment of walking difficulties in MS. Ampyra has been shown to aid people in walking faster and provides better walking endurance in a sub-set of people with MS. However, Ampyra has not yet been shown to improve upper-extremity function in a similar fashion. Researchers presented a study that tested Ampyra’s impact on upper extremity function. A total of 68 people who had a good response to Ampyra in walking measures were enrolled in the open-label study. At day 14, month three and month six, investigators found significant improvement in tests of upper-extremity function. This study provides evidence that Ampyra may improve upper-extremity function in some individuals with MS, specifically those who also find that Ampyra improves their walking abilities.

Treatment of Spasticity with Marijuana Derivatives

Spasticity can be a challenging symptom for individuals with MS. Available treatments include stretching, baclofen or other muscle relaxants, and botulinum-toxin injections. While these treatments are effective for many, a portion of the MS population still have a need for better spasticity control. Some individuals with MS report a beneficial effect from marijuana on spasticity. Sativex® (nabiximols) is a spray that has been formulated using an extract of THC:CBD, the active components of marijuana, from the marijuana plant. Sativex allows for a standardized dose that is able to be studied as opposed to marijuana itself, which is difficult to quantify for study purposes.

Investigators presented a study of Sativex in which it was added to traditional spasticity medications in a double-blind, placebo-controlled study. In the study, people were first given Sativex in an initial phase where responders were identified. The responders were then enrolled in a double-blind study phase (both examiner and the person taking Sativex did not know if they were being given Sativex or placebo), and spasticity scores were compared in both groups. Of the 191 individuals who enrolled in the study, 70.5 percent were identified as initial responders and were enrolled into the double-blind phase. After 12 weeks, the responder rate was 77.4 percent in the Sativex group versus 32 percent in the control group. The difference was statistically significant and adverse events in the trial were all mild or moderate. This study found a beneficial effect of Sativex as an add-on medication in the treatment of spasticity in a double-blind, placebo-controlled trial, and gives support for Sativex as an additional option for the treatment of spasticity in some individuals with MS.

Wellness, Diet, Lifestyle, and Environment

Overall Wellness

There has been increasing focus on wellness and MS in recent years. In order to optimize health outcomes in people with MS, better data is needed on the impact of overall health on a person’s MS-disease course. Researchers presented data from a study of people with early MS that correlated wellness factors to MRI measures. A total of 105 people with MS diagnosed within the last five years were included in the study. Wellness metrics included: blood pressure, resting heart rate, cholesterol, vitamin D, hemoglobin A1C (a measure of blood sugar), and sleep. They found that people with MS who had more sleep, lower heart rate, and lower cholesterol, had greater cortical thickness on MRI. Cortical thickness relates to the amount of tissue in the gray brain matter, and presumably, a greater cortical thickness means that more brain tissue exists, thus suggesting a preservation of these areas. This study provides intriguing data that suggests that a person’s overall health may significantly impact their MS.


Multiple studies have been published linking smoking to increased risk for MS as well as to MS disease severity. A new study presented looked at whether a link may be found between people with MS with certain genetic markers who continue to smoke, and the risk for relapse. Investigators looked at 305 persons with MS who were treated with Tysabri. They found a 1.35-times increased risk for relapse in persons with MS who smoke compared to those who did not. They did not find that genetics influenced this risk further. Given that Tysabri is a potent treatment for MS, it is interesting to see that environmental factors such as smoking may still impact its effectiveness. More importantly, this study gives further evidence that smoking can have a negative effect on the MS course. All people with MS who smoke should be encouraged to stop for optimal MS-disease control.


Wellness includes good nutrition, exercise, good sleep, and emotional stability. There are many ways for people to achieve emotional balance. Humor is one method that may be helpful to attain emotional wellbeing in some. Researchers presented data that evaluated the role of humor on social functioning and the perception of stress and wellbeing in 172 people with MS. They found that those who used humor often reported a greater sense of wellbeing, overall health, self-efficacy, and social support. Additionally, they reported lower levels of depression and anxiety. This study suggests that humor may be a useful tool in increasing wellness in individuals with MS.

Barriers to Effective Communication

The Multiple Sclerosis Association of America (MSAA) presented important data from an international survey designed to explore the barriers to effective communication between individuals with MS and their healthcare providers. This survey, which was distributed to more than 500 MS neurologists around the world, is one of the first steps put into place by Navigating MS – a global initiative aimed at optimizing therapeutic decision-making and improving outcomes for individuals with MS.

Navigating MS is comprised of nearly 40 representatives from MS-advocacy organizations, neurologists, nurses, and physical therapists in the United States, the European Union, and Australia. This group was formed to improve the way that persons with MS, care partners, and their healthcare professionals communicate about treatment decisions.

While DMTs present an opportunity to optimize disease management for individuals with MS, the myriad of treatment options available and absence of consensus treatment protocols may result in confusion around how to select the best treatment strategy in the face of an uncertain disease progression. Furthermore, the benefits and risks of DMTs need to be appropriately understood and assessed by all involved. One of the keys to providing such care is the ability to interpret these benefits and risks, and to have the tools to discuss these in a shared decision-making environment.

Barriers to this kind of communication occur in clinical practice. These include: lack of understanding of a shared decision-making approach; time/resource constraints; difficulty for the individual with MS in accessing the physician’s office or clinic due to geography; lack of disease understanding on the part of the individual with MS; different expectations between the individual with MS, his or her care partner(s), and the healthcare professional; and lack of current MS treatment knowledge on the part of the healthcare professional. Finally, the best practice for communication is likely to differ depending on the cultural values and expectations of the individual with MS.

This information will be helpful for the Navigating MS initiative in developing a survey for MS nurses, as well as individuals with MS and their care partners. The goal will be to identify targeted and culturally relevant interventions aimed at improving how MS healthcare professionals and individuals with MS communicate about the benefits and risks of treatment and non-treatment.


A Walking Prescription for MS

Exercise is well-acknowledged to have a positive impact on people with MS. Despite this, it is challenging for many to initiate and maintain an exercise program. Researchers presented a study that evaluated different walking programs and their ability to lessen MS symptoms and positively impact quality of life. The three programs that were studied were a twice-daily, six-minute walk, a 30-minute program three-times per week, and a 45-minute program twice per week. Study participants were randomized to one of these groups or a control group and instructed to carry out their prescription at home for three months.

After three months, researchers found that the people who did the six-minute walk twice daily and the 30-minute walk three-times per week experienced the greatest benefit in terms of decreasing pain and fatigue (in the six-minute walk group) and depression and anxiety (in the 30-minute walk group). Quality of life also improved for most in these two groups. The strength of this study is that the interventions that were examined are possible to carry out in everyday life without any professional intervention or need for specialized equipment. Most people with MS strive to increase their activity levels whenever possible, and either of these walking regimens could be useful for this goal.

For general information or to speak with a trained Client Services Specialist, please call MSAA’s Helpline at (800) 532-7667, extension 154. Questions to MSAA’s Client Services department may also be emailed to MSquestions@mymsaa.org.

Written by Michelle Fabian, MD
Attending Physician, Corinne Goldsmith Dickinson Center for MS

Reviewed by Jack Burks, MD, MSAA Chief Medical Consultant
Edited by Susan Wells Courtney, MSAA Senior Writer