Survey Results Presented at ECTRIMS Reveal People with Multiple Sclerosis Want More Information on Brain Atrophy

A new survey examines the topic of brain volume loss, known as brain atrophy, in people with multiple sclerosis. The survey findings, presented at ECTRIMS 2018, suggest that there is a high level of interest in better understanding how brain atrophy may impact disease progression. Sixty-three percent of respondents reported that they have not talked to any member of their medical team about brain atrophy; only 20 percent reported being moderately or very satisfied with the amount of information available on potential ways to prevent brain atrophy. The survey, conducted by the Multiple Sclerosis Association of America (MSAA) and sponsored by Celgene, included more than 1,300 people with multiple sclerosis or someone responding on their behalf.

“Brain atrophy is strongly correlated with the development of disability and neuropsychological impairment in patients with multiple sclerosis. Yet patients generally do not have a clear understanding of all of the factors that can affect the course of their disease, especially brain atrophy,” said Rohit Bakshi, M.D., M.A., Director, Laboratory for Neuroimaging Research, in the Ann Romney Center for Neurologic Diseases at Brigham and Women’s Hospital and the Jack, Sadie and David Breakstone Professor of Neurology & Radiology at Harvard Medical School. “The survey data suggest that there is a real need and an opportunity to better educate people with multiple sclerosis on the role brain atrophy plays in disease progression.”

Patients are concerned with cognitive issues

Cognitive changes are a common symptom of multiple sclerosis, affecting more than half of those living with the condition. Based on the survey findings, maintaining cognitive function is the second most common concern for respondents, reported by 27 percent of respondents as the most important consideration in the management of multiple sclerosis. Only the prevention of physical disability progression was reported more often (45 percent).

Patients want more information about the importance of brain atrophy

The progressive shrinkage of nerve tissue in the brain, known as atrophy, can impair the function of the affected area and is thought to be related to neuropsychological impairments, including cognitive deficits, in people with multiple sclerosis. Brain atrophy also has an impact on disease progression, but the survey participants indicated that many doctors don’t speak with them about brain atrophy or the role it plays in disease progression. A striking 63 percent of respondents reported that they have never talked to any member of their medical team about brain atrophy. And while almost 90 percent of respondents have an MRI at least every three years, only 20 percent said their doctors talked about brain atrophy when discussing MRI results.

Greater education is needed on the role of brain atrophy in the management of multiple sclerosis

A growing body of evidence demonstrates that brain atrophy is a major driver of disease activity and a predictor of long-term disability. Yet educational materials and initiatives for those living with multiple sclerosis are lacking; only 20 percent of respondents were either moderately or very satisfied with the amount of information available to them on how to potentially prevent brain atrophy. According to MSAA, neurologists and nurses could offer critical support in educating people with multiple sclerosis and their loved ones on the latest research in brain atrophy.

“Celgene is honored to support the Multiple Sclerosis Association of America on this important initiative to increase educational efforts around how multiple sclerosis impacts the brain and ultimately leads to worsening symptoms, including declines in cognitive function,” said Joel Beetsch, Vice President, Global Patient Advocacy, Celgene. “These survey findings further support that patients could benefit from additional information to better understand brain atrophy.”

About the Survey

This survey examined participants’ knowledge about the effects of multiple sclerosis on the brain, including brain atrophy, and how this issue is being discussed between patients and their healthcare professionals. Participants in this self-administered online survey included 1,337 people with multiple sclerosis, or someone responding on their behalf. Eighty percent of the respondents were women. The survey was conducted in March of 2018.

Support and funding for this initiative was provided to MSAA by Celgene.

About Multiple Sclerosis

Multiple sclerosis (MS) is a disease in which the immune system attacks the protective myelin sheath that covers the nerves. The myelin damage disrupts communication between the brain and the rest of the body. Ultimately, the nerves themselves may deteriorate — a process that's currently irreversible. Signs and symptoms vary widely, depending on the amount of damage and the nerves affected. Some people living with MS may lose the ability to walk independently, while others experience long periods of remission during which they develop no new symptoms. Multiple sclerosis affects approximately 400,000 people in the U.S. and approximately 2.5 million people worldwide.

Relapsing multiple sclerosis (RMS) is characterized by clearly defined attacks of worsening neurologic function. These attacks — often called relapses, flare-ups or exacerbations — are followed by partial or complete recovery periods (remissions), during which symptoms improve partially or completely with no apparent progression of disease. RMS is the most common disease course at the time of diagnosis. Approximately 85 percent of patients are initially diagnosed with RMS, compared with 10-15 percent with progressive forms of the disease.

Disclosures

Dr. Bakshi has received consulting fees from Bayer, Celgene, EMD Serono, Genentech, Guerbet, Sanofi-Genzyme and Shire and research support from EMD Serono and Sanofi-Genzyme.

About Celgene

Celgene Corporation, headquartered in Summit, New Jersey, is an integrated global pharmaceutical company engaged primarily in the discovery, development and commercialization of innovative therapies for the treatment of cancer and inflammatory diseases through next‐generation solutions in protein homeostasis, immuno‐oncology, epigenetics, immunology and neuro‐inflammation. For more information, please visit www.celgene.com. Follow Celgene on Social Media: @Celgene, Pinterest, LinkedIn, Facebook and YouTube.

About MSAA

The Multiple Sclerosis Association of America (MSAA) is a national nonprofit organization and leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a Helpline with trained specialists; award-winning publications, including MSAA’s magazine, The Motivator; MSAA’s nationally recognized website featuring award-winning educational videos and research updates; S.E.A.R.C.H.™ program to assist the MS community with learning about different treatment choices; a mobile phone app, My MS Manager™ (named one of the best multiple sclerosis iPhone & Android apps by Healthline.com); a resource database, My MS Resource Locator®; safety and mobility equipment distribution; cooling accessories for heat-sensitive individuals; educational programs held across the country; MRI funding; My MSAA Community, a peer-to-peer online support forum; a clinical trial search tool; and more. For additional information, please visit www.mymsaa.org or call (800) 532-7667.

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