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Researchers at Major MS Meeting Report Progress in Wellness and Symptom Management

June 17, 2015

Important research results focusing on finding solutions for people with MS were presented at the 2015 Annual Meeting of the Consortium of MS Centers (CMSC), held on May 27 - 30 in Indianapolis, Indiana. This meeting brings together health care professionals committed to improving the lives of people with MS. Here is a sample of the research presented, including key findings on promoting wellness and reducing symptoms to restore function for people with MS. The complete book of abstracts is available here.

Testing a diet for MS:  The “Therapeutic Lifestyle Change” (TLC) is a diet created by the National Institutes of Health that emphasizes reducing cholesterol and fat, and has been shown to enhance immune system function. Lacey Bromley and colleagues (State University of New York at Buffalo) are assessing the TLC diet in people living with MS, while monitoring compliance over 3 months using online tools. Preliminary results showed that participants are adhering to the diet and the online recording system, and showed trends toward improvement in quality of life, fatigue, and functional mobility. Learn what you can do now to eat healthy with MS. Abstract CC01

Pain points: Pain is one of the most troublesome symptoms for people with MS, and researchers are trying to find ways to eliminate it.

  • Meditation for pain: “Mindfulness training” is a form of meditation aimed at reducing pain or emotional distress that occurs from health-related changes. Cecilia Wan (St. Michael’s Hospital, Toronto, ON) and colleagues tested whether a mindfulness-based meditation group – meeting once weekly for more than 2 hours – could reduce pain in 13 people with MS. Results showed a significant reduction in perceived pain and improvements in quality of life and mental health.  Abstract QL20
  • MS, something else, and pain: Kirsten M. Fiest (University of Manitoba, Winnipeg) and colleagues examined the relationship between comorbidities (conditions that occur alongside MS) and pain in 949 people with MS. Of the participants, 41.5% had at least one comorbid health condition, and 40.5% experienced disruptive pain. Pain was significantly increased in the presence of comorbidities that included fibromyalgia, rheumatoid arthritis, depression, and hypertension. Examining these associations may help to manage pain in MS. Abstract SX14

Moving fitness efforts forward: Researchers are looking for novel ways to boost exercise and physical activity, so that people with MS can reap the benefits:

  • Exercise at home: Rachel E. Klaren (University of Illinois at Urbana-Champaign) presented results from a Society-funded study in which 20 people with MS and mild disability were randomly assigned to a 12-week home cycling program or a control program involving stretching and muscle strengthening. Participants in both groups had weekly video chats with a behavioral coach. There were significantly greater improvements in cardiac function and mobility in the cycling group. Abstract RH02
  • Exercise -- Phoning it in: Aaron P. Turner (University of Washington, Seattle) and colleagues compared the impact of a home exercise program that employed six telephone motivational sessions to a control program that consisted of exercise advice and a DVD.  Participants receiving telephone counseling reported significantly increased physical activity, and reduced fatigue and depression compared to those in the control group. Abstract CP19
  • Breathing better: Weakness and fatigue in respiratory muscles (that facilitate breathing) can lead to reduced exercise performance. Nadine M. Fisher (University at Buffalo) and team studied the effects of a six-week respiratory muscle training program in 29 people with MS and mild-to-moderate disability. The program improved respiratory muscle strength, exercise endurance, and participants’ perceptions of fatigue. Abstract RH06
  • Shall we dance?: Alexander V. Ng (Marquette University, Milwaukee, WI) and colleagues are investigating whether an 8-week recreational ballroom dance program could improve physical function and quality of life in people with MS. One-hour sessions, twice a week, include rumba, foxtrot, waltz, swing, American tango, push-pull, and salsa. Participants are paired with a partner without MS. Preliminary results in 12 people indicated improved motor performance, gait, endurance, and cognition. Abstract QL13

Creating solutions: Several programs created by the National MS Society are achieving better access to care for people with MS and helping them to live their best lives:

  • Reaching the underserved: Gary Stobbe (University of Washington, Seattle) reported on a pilot of MS Project ECHO, a collaboration between the University of Washington and the Society to improve access to MS care in underserved areas. Primary care providers and community neurologists learned about MS care through weekly videoconferencing sessions with MS specialist neurologists that included didactic presentations and group discussions around their challenging cases. All participants received continuing education credits. MS Project ECHO successfully increased the knowledge and confidence of community providers treating people with MS. These results will be confirmed in larger and longer-term studies. The pilot was funded with a grant from the Medtronic Foundation–Patient Link Program. Abstract TC07
  • Navigating MS: The Society’s MS Navigator program begins with the Information Resource Center, a 5 day/week call center, where MS Navigators connect people affected by MS to information, resources, and support.  Lisa Custy (National Multiple Sclerosis Society, Denver, CO) administered surveys to 294 participants after initial calls and six weeks later. People with MS who had higher levels of MS symptoms reported a significant increase in quality of life, confidence in their ability to cope and health care satisfaction, and decreases in stress and anxiety. Abstract QL03
  • Positive thinking: The Society’s “Everyday Matters: Living Your Best Life with MS,” aims to increase knowledge of positive psychology and how to apply it to the  challenges of living with MS. Kimberly Koch (National Multiple Sclerosis Society, Denver, CO) and colleagues reported on surveys administered before (254 people), right after (209) and three months after (164) participating in the program. Results showed significant increases in satisfaction with life and confidence in MS symptom management, and increased use of positive psychology and MS-related resources. Abstract QL11

Driving solutions: Behind all interventions that make lives better, are researchers who collected the data that made them possible – here are some examples of such efforts:

  • Testing pregnancy knowledge: Sarah F. Wesley (Corinne Goldsmith Dickinson Center for Multiple Sclerosis, New York, NY) and colleagues administered a questionnaire to 37 women with MS to assess their knowledge on pregnancy and MS. Participants answered an average of 32.8% of questions correctly overall. The results identified important misconceptions, such as low awareness of the need for birth control while on disease-modifying treatments.  The team intends to confirm the findings in a larger study to plan educational initiatives that address the deficits. Abstract CC17
  • Understanding the needs of Hispanic /Latinos with MS:  Craig D. Wesley (National Multiple Sclerosis Society, New York, NY) gathered information and feedback from 191 Hispanic/Latino individuals and families affected by MS who participated in Spanish-speaking focus groups or an online survey. Participants sought information about symptom management, MS research updates and treatment options, and indicated that educational materials and resources were not readily available in Spanish. As a result, the Society is developing a strategic plan to address the challenges of Hispanic/Latinos with MS. Abstract QL21

Financial issues: These issues can greatly affect daily life with MS. 

  • Insurance and disease-modifying treatment: Stacey S. Cofield (University of Alabama at Birmingham) and colleagues surveyed 4,507 people with MS enrolled in NARCOMS. Nearly all (99.5%) participants had health insurance; 68.6% reported that their insurance coverage had not changed in the prior year, while 23.0% reported less adequate coverage compared to 12 months ago.  A total of 2.4% reported having to stop/change/ skip treatment due to higher copays; and 1.6% reported not taking treatment because they did not have insurance or insurance denied the medication. Abstract DX76 Learn how to appeal insurance limits or denials
  • Employment: What people with MS think - Phillip D. Rumrill (Kent State University, Kent, OH) and colleagues were funded by the Society to survey a random sample of 1924 adults with MS on employment concerns. They found that people with MS needed help understanding national health insurance and disability civil rights legislation; effective ways to disclose disability to employers and request accommodations; and strategies for identifying job alternatives in the same company. Find answers to questions about employment. Abstract RH27

Predicting fitness to drive: Determining whether an individual with MS is fit to drive usually involves the administration of 15 or more physical, visual, and cognitive tests, and the process typically lasts longer than 3 hours and costs more than $500. Abiodun E. Akinwuntan (Georgia Regents University, Augusta) and colleagues developed a short battery of cognitive tests and used it, with Society funding, to predict whether 63 participants with MS would pass the on-road driving test.  The short battery – which can be completed in less than 1 hour and costs less than $250 – predicted fitness to drive with 83% accuracy and may be a good substitute for the longer fitness-to-drive testing. Read more about driving concerns. Abstract CP02

eDiaries for tracking symptoms: MS symptoms are varied and complex, but many can be addressed. Pamela K. Newland (Goldfarb School of Nursing, St. Louis) tested the feasibility of measuring sleep problems and MS symptoms using electronic diaries delivered via email. A total of 28 participants completed 82.3% of the diaries daily for 7 consecutive days, and repeated the process 8 weeks later. Participants reported being comfortable with this method of reporting symptoms. Tailoring this technology to people’s needs and preferences may improve MS symptom management. Abstract TC02

Read more from the complete book of CMSC abstracts.
Read more about research into wellness and lifestyle
Read more about living well with MS
 

About Multiple Sclerosis

Multiple sclerosis is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. Symptoms range from numbness and tingling to blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are leading to better understanding and moving us closer to a world free of MS. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease. MS affects more than 2.3 million people worldwide.

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