CMSC and ACTRIMS Cooperative Meeting Highlights (2014)
Highlights from the Sixth Cooperative Meeting of the Consortium of Multiple Sclerosis Centers (CMSC) and Americas Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS), held in Dallas, Texas, May 28 through May 31, 2014
Written by Margaret M. McCormick, RN, BSN, MSCN
Reviewed by Jack Burks, MD, MSAA’s Chief Medical Officer
Edited by Susan Wells Courtney, MSAA Senior Writer and Creative Director
The largest and most comprehensive meeting on multiple sclerosis (MS) care and research in North America took place May 28 through May 31 in Dallas, Texas, combining the 28th Annual Meeting of CMSC and the 19th Annual Meeting of ACTRIMS. This is the sixth year both organizations have met together to bring researchers and clinicians from across the spectrum of MS care to share and discuss the latest research findings in MS. This multidisciplinary approach, which brings physicians, nurses, physical and occupational therapists, psychologists, social workers, pharmacists, rehabilitation specialists, and advocacy professionals together in a single meeting, is unique and ensures that the impact of MS on the whole person is considered.
While this article includes topics of particular interest to those directly affected by MS, it may also address informational needs of MS healthcare professionals. Below are brief highlights of some of the research findings regarding the wide range of issues affecting people with MS.
Quality of Life
Improved ability to cope with stressful life situations and enhanced relaxation were reported in individuals participating in a six-week program that utilized mindfulness training. Mindfulness is simply an awareness of what is occurring in the present moment with an attitude of interest and non-judgment or acceptance. The one-hour weekly program consisted of lectures, discussions, and mindfulness exercises including body awareness, breathing, progressive relaxation, meditation, visualization, and hypnosis. Decreasing the impact of stress may result in an increased quality of life for people affected by MS.
Women with MS attending an eight-week wellness training program combined with group acupuncture treatments generally agreed that the acupuncture was relaxing and the wellness classes were helpful to lifestyle management. The participants also noted that they were sleeping better and felt less fatigued. There were several reports of transient side-effects (leg twitching, leg cramps, blurred vision, and pain upon moving), but only one participant (of 14) said that acupuncture was a negative experience for her.
Most individuals with MS who prematurely leave the workforce, reduce hours, or change jobs, do so because of physical symptoms, cognitive symptoms, or both. Physical symptoms include fatigue, muscle weakness, and visual problems. Cognitive symptoms cited were problems with memory and mental agility (the ability to shift from concept to concept along the way). Fatigue was the most commonly cited reason for the change. The negative impact on mental status, family life, and financial stability should not be underestimated.
MSAA Chief Medical Officer Jack Burks, MD, notes that steps to deal with these issues should be a part of the family’s “game plan” for treating MS symptoms. Some individuals are able to extend their time in the workforce through strategies such as having accommodations made, using assistive technology, and taking advantage of vocational rehabilitation.
Most women with MS report decreased libido. The most frequently cited explanation is fatigue. Also noted were a lack of sensation, effects of antidepressant therapy, not enough strength, and pain. These data present an opportunity to prevent or treat these issues. By being aware of this potential issue for women with MS, couples may be more proactive in their approach to this symptom.
Several strategies may be helpful to assist women with decreased libido, including energy-saving techniques to reduce fatigue. Individuals may greatly benefit by consulting their healthcare professional who may change their medication regimen (if that is a contributor), recommend a therapist, or provide other treatment strategies.
Combined efforts of a Registered Dietician (RD) and an Occupational Therapist (OT) offer an effective strategy for assisting individuals with MS-related fatigue. A retrospective chart review of 100 randomly selected records of MS patients seen in a Canadian MS clinic revealed that 67 percent were affected by fatigue. The review documented the positive impact of the collaboration of the RD and OT when addressing this troublesome symptom. The RD provided information about a well-balanced diet and the OT provided guidance on healthy sleep interventions, assistive equipment, and technological strategies.
Pediatric or Adolescent MS
Adolescents with MS and their caregivers do not accurately assess the patient’s readiness to transition into the adult system of MS care. As young people with MS become older and outgrow
the pediatric healthcare system, these individuals and their care partners need to know specifics about the disease, long-term treatments, symptom management, healthy lifestyle practices, and whom to speak with when problems arise. The average patient score was only 65 percent on an assessment of their understanding of the pathophysiology of MS, medications, health maintenance, and communication. Further, the nurse, caregiver, and patient scores, related to the patient’s readiness, were inconsistent. To ensure uninterrupted, high-quality care, it is important that standard recommendations for transition of care be developed.
According to the study’s abstract, the American Academy of Pediatrics states that uninterrupted and appropriate healthcare services need to be available for someone with a chronic disease to transition well from adolescence to adulthood. Recommendations for a standard transition of care have been in place for illnesses such as diabetes, but none exist for MS. The study concludes that “A multidisciplinary transition-of-care program is essential in order to equip adolescent MS patients to [be able to] navigate the healthcare system.” The authors of this study predict that such a program would improve disease outcomes, increase adherence to medication, reduce hospitalizations, and
improve overall quality of life.
Although no significant difference in salt intake was found between a group of children with pediatric onset MS and a group of children who did not have MS in a preliminary analysis, the researchers point out the need for further investigation, noting a trend toward an increase in the likelihood of MS with a higher salt intake in an adjusted model. This adjusted analysis took into consideration the age, race, and insurance status of the study’s participants. More research is needed in this area, because not only has high-salt intake been found to increase the onset and progression of MS-like disease in animal studies, but recent studies with MS patients have shown that greater sodium intake increases MS-disease activity.
Study results presented at the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) annual meeting in October 2013 support the potential negative effects of high-salt intake. One study found that people with MS who had a high-salt intake (more than 4.8 grams daily) had relapse rates that were almost four-times greater than those with salt intakes of less than 2 grams per day. Dr. Burks notes that many of the lectures at this year’s CMSC/ACTRIMS meeting mentioned the negative consequences of high salt in one’s diet as well.
In a sample of 237 women with MS, those who reported having a higher weight in early adulthood were younger at the onset of MS symptoms and at the time of MS diagnosis. Further research is
needed to determine if body weight is causally linked to or a risk factor for MS. Similar to the previous study results, where salt intake is mentioned as a possible risk factor for developing or worsening MS, weight may potentially play a role as well. By examining these types of factors, researchers hope to better identify who may be at a greater risk of developing MS and potentially learn ways that the risk may be reduced – and this could potentially be found to be helpful in reducing the risk of pediatric MS.
A test administered to 50 people with MS identified personality traits that included a low tolerance for frustration, some indication of cognitive and emotional changes, and a tendency to develop obsessive-compulsive disorder. Demyelination of certain parts of the central nervous system (CNS) is known to result in psychiatric disorders, emotional issues, and cognitive changes.
By knowing that individuals with MS are at a greater risk of developing these types of problems, such issues may be recognized and treated early. Effective treatments under the direction of a medical professional may include counseling (both individual and family), medication, networking with others through support groups or online programs, and other therapies as deemed appropriate by one’s healthcare team.
A higher-than-expected proportion of people with MS have symptoms suggestive of bipolar disorder when compared to the general population in the United States. As with the personality traits noted above, knowing that someone may be at a greater risk of this disorder can assist with early recognition and intervention. According to the study, early recognition and intervention may improve medication adherence and overall quality of life.
Gait Dysfunction Interventions
The assistance of a certified service dog can result in improved walking speed in people with MS. Participants in this study were individuals with MS who had a gait abnormality secondary to MS, but did not require an assistive device. The results showed a significant difference (improvement) in the Timed 25-Foot Walk in individuals who were accompanied by a service dog compared to the same individual without such assistance. The authors believe that this is the first study to evaluate the effectiveness of a service animal to improve walking in MS. These results are encouraging as they may present another option for some individuals as part of their treatment plan to improve walking speed.
Rhythmic Auditory Stimulation (RAS) produces an immediate increase in the number of steps per minute in patients with a gait disturbance due to MS. RAS is a technique by which a series of sounds are
presented at a fixed rhythm that may result in patients synchronizing their movements to the rhythms. When accompanied by the mental imagery of walking, the use of RAS also resulted in increased activity in the part of the brain
activated by actual walking, as compared to activity in that same part of the brain without the use of RAS.
Although this was a small study, the authors conclude that “These results warrant further studies on the mechanism of action and impact of RAS on walking in individuals with MS.” Similar to the previous study mentioned, these results are intriguing and may eventually lead to novel ways of helping to improve walking speed.
Exercise and Aquatic Exercise
With the goal of developing innovative ways to increase motivation and enjoyment of exercise among individuals with MS, a modified version of a triathlon can be customized to suit the needs of its participants. It is important to identify ways to support individuals living with MS in their efforts to remain physically active, despite the challenges MS presents. A Swim/Bike/Run (Walk) event was modified to include a 30-minute swim in a pool without a deep end; a 30-minute bike event utilizing stationary recumbent bikes; and a 30-minute walk/run event using treadmills. Participants were able to rest whenever needed, and in the swim portion, could use life preservers, kickboards, or any other type of assistive equipment; along with no deep end to the pool, these items helped to reduce any fear of the water.
Assistive devices, volunteers in the locker rooms to assist with changing after the swim portion, and upper-extremity bikes were some of the other ways that organizers ensured the safety and enjoyment of participants. The authors of this report found that a modified triathlon was “an innovative way to help people with MS stay motivated… and is also an effective way to support and empower people with MS to stay healthy and active.”
Aquatic training results show improvement in mobility and quality of life for individuals with MS. A randomized, controlled trial demonstrated improvement in balance, strength, fatigue, and quality of
life in a group of individuals with chronic MS who participated in a 10-week aquatic training program. The improvements were determined when compared to a control group that did not participate in the program. In addition, no
MS-related exacerbations were reported in any of the people taking part in the trial.
A systematic review of research findings on the benefits of aquatic exercise in people with MS revealed that aquatic training results in positive outcomes. Improvements include improved flexibility, range of motion, cardiovascular endurance, fatigue level, muscle strength, mobility function (including gait and balance), quality of life, and psychological wellbeing. None of the 11 studies that were reviewed (with 141 participants) identified any negative change in the participants’ neurological status.
Editor’s note: For more information about the benefits of aquatic exercise as well as how to get started, interested individuals may visit MSAA’s Swim for MS online Aquatic Center (at aquatics.mymsaa.org), dedicated to increasing awareness, understanding, and availability of water-based exercise programs as a positive wellness opportunity for the MS community.
An observational study of individuals with MS who were newly prescribed dalfampridine extended release (D-ER) demonstrated significant improvement in functional tasks of both the arms and legs. This was observed even among those who did not improve on the traditional Timed 25-Foot Walk test.
This medication, with the brand name Ampyra™, is an oral, timed-release medication developed to improve the conduction of impulses between damaged nerves of the central nervous system (CNS). Phase III clinical trials showed that a greater number of individuals with MS experienced improvement in walking speed when taking Ampyra, compared to when taking a placebo. Ampyra was granted approval in 2010 to improve walking speed in individuals with MS.
While the indication for this medication is to improve walking speed in individuals with MS, this study suggests that it may have additional benefits to both lower and upper extremities. The latter includes potential improvement in arm and hand function, as shown by improved performance on the Nine-Hole Peg Test.
Patient adherence to recommended safety monitoring with Gilenya and Aubagio is poor. A retrospective chart review of the first six months of therapy of all patients who received Gilenya® (fingolimod, FTY720) or Aubagio® (teriflunomide) at one MS center revealed that only 38 percent of Gilenya patients received the recommended eye examination at month four to rule out macular edema (a condition that has the potential to negatively affect vision). The review also found that 58 percent of patients taking Aubagio received three or fewer of the required six monthly blood tests to check for liver damage.
Despite having been educated on the risks and benefits of the drug, as well as receiving written instructions and prescriptions regarding the required testing, these patients did not follow through with the recommendations of their healthcare providers. Failure to comply with the recommended monitoring can lead to serious, even life-threatening complications. This reinforces the need for increased patient education and awareness, along with closer monitoring by the patient’s healthcare team.
An Overview of CMSC/ACTRIMS Sessions from MSAA’s Chief Medical Officer
MSAA’s Chief Medical Officer Dr. Jack Burks explains, “In addition to the abstracts noted above, I would like to provide a quick overview of some of the sessions that I attended at the CMSC/ACTRIMS meeting. In general, I found the information presented at this year’s conference to be extremely positive, with much reaffirming data on the presently approved disease-modifying therapies (DMTs) and many new potential treatments on the horizon.
“For instance, 20 years of treatment with the injectable DMTs have established their long-term safety and effectiveness for individuals with relapsing forms of MS. Tysabri continues to greatly impact disease activity, while initial and periodic blood testing and close monitoring help protect people from developing progressive multifocal leukoencephalopathy (PML), a rare but potentially fatal brain infection. The three oral DMTs are also doing very well in terms of safety and effectiveness, along with their convenient administration. Nonetheless, doctors and patients need to follow monitoring recommendations closely to stay apprised of potential side effects.
“In terms of new treatments on the horizon, we see positive data on Plegridy, Lemtrada, daclizumab, laquinimod, ocrelizumab, ofatumumab, ibudilast, anti-LINGO antibody to increase myelin repair, stem cells, and many others. These new (unapproved) treatments, some of which are already under consideration by the United States Food and Drug Administration (FDA), would give the MS community several additional treatment options. We are also very encouraged by the fact that several trials in progressive MS are currently underway. Results from some of these studies may be known by the end of 2014.
“Regarding patient care, we’re seeing a great deal of study in the areas of fatigue, cognition, depression, mobility, and quality-of-life issues. In addition to medications, organized and supervised exercise programs, which include activities such as swimming and dance, can lead to increased strength and stamina, along with improvements in cognition and depression. MS centers continue to report that a team approach for treating the entire patient results in improved function, a greater quality of life, and better adherence to disease-modifying therapies.”
For more information or to speak with a trained Helpline consultant, please call MSAA at (800) 532-7667. Questions to MSAA’s Client Services department may also be emailed to MSquestions@mymsaa.org.
Editor’s note: MSAA does not endorse or recommend any specific products or therapies. Readers are advised to consult their physician before making any changes to their medication, diet, exercise, or other treatment regimen. Initial study results from therapeutic agents under investigation should be considered as preliminary, since additional studies and/or evaluations may be needed to prove the safety and efficacy of these agents. Please note that the different lengths of text dedicated to each topic should in no way be considered as favoritism toward any one product. The information given in this article is just a sampling of various highlights from this year’s CMSC/ACTRIMS meeting.