#ECTRIMS2018 – Role of Brain Atrophy in MS Progression Poorly Understood by Patients, MSAA Survey Finds

#ECTRIMS2018 – Role of Brain Atrophy in MS Progression Poorly Understood by Patients, MSAA Survey Finds

Although brain atrophy — the loss of brain volume — is an increasingly important measure in multiple sclerosis trials and treatment outcomes, MS patients have a limited understanding of its role in disease progression, a survey reveals.

This finding was detailed in the presentation “Brain atrophy in multiple sclerosis: how patients understand the role of brain atrophy in the management of their MS” at the 34th congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS), that recently concluded in Berlin.

An online and self-administered survey, conducted by the Multiple Sclerosis Association of America (MSAA) and sponsored by Celgene, included 1,337 MS patients or someone responding on their behalf. Questions focused on participants’ knowledge about the effects MS has on the brain, and whether this issue is raised in discussions between patients and healthcare professionals. The survey was conducted in March.

The majority of the respondents were women (80%). Most reported currently using a U.S. Food and Drug Administration (FDA)-approved MS disease-modifying therapy, and primarily receiving care at an MS comprehensive center given by a team of specialists.

Survey data showed that about 43% of respondents associated brain atrophy mostly with poorer cognitive function, and about 38% saw it as a sign of disease progression.

A near majority, 45%, of respondents identified preventing physical disability progression as their most important therapeutic target in managing their disease. Maintaining cognitive function ranked second, identified by 27% of respondents.

But MS-associated cognitive loss is an issue of clear concern among MS patients, and one that has a major impact on quality of life. Approximately 78% of the respondents reported to be either very or extremely concerned about MS-related cognitive decline, and 29% said that cognitive impairment was significantly affecting their life quality.

Still, only 20% of respondents considered themselves to be moderately or very satisfied with the information made available to them regarding brain atrophy in MS. And 62.7% reported never discussing brain atrophy with a member of their MS care team.

“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,” Rohit Bakshi, MD, director of the laboratory for neuroimaging research in the Ann Romney Center for Neurologic Diseases at Brigham and Women’s Hospital, said in a press release.

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“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,” Bakshi added.

While almost 90% of patients undergo magnetic resonance imaging (MRI) scans to assess brain health at least once every three years, only 20% reported speaking with their doctors about brain atrophy in discussions of MRI scan results.

“These survey findings further support that patients could benefit from additional information to better understand brain atrophy,” said Joel Beetsch, vice president of global patient advocacy at Celgene.

“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,” Beetsch added.

Overall, the survey shows that a need for better understanding of brain atrophy and its role in MS progression among patients, and their caregivers and  loved ones. According to the MSAA, healthcare professionals play a critical role in offering such education.

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  1. Bonnie G says:

    I was told by my Drs PA that there is atrophy. That was at least 10 years ago.
    I saw that my Dr gave a “ look” to the PA, as if to say stop that conversation. It has never been brought up again. I was on Tysabri for 8 years then took a break from the medication.
    I never went back on.
    Just recently I have noticed more forgetfullness.
    I heard there is a trial for a drug that helps patients with atrophy of brain. Last I read that it is in phase 3 of trials with promising results. I would like to know more about it as it has been a treatment for asthma which I also have.

  2. Christine Parker says:

    The radiologist, called out atrophy on my 2016 brain MRI for the first time. I am pretty sure I had atrophy for a while before that though.
    I have significant cognitive impairment and have had it for 12 years. I also have atrophy of the optic nerve and atrophy of the T-Spine. There was not much focus on paying attention to atrophy in MS in most of the clinical neurology practices it seems, but that is changing now. For my brain MRIs, I ask for a 3T MRI with Neuroquant analysis to measure the atrophy to make sure the rate of atrophy has not worsened.

    Ibudilast is the drug used for asthma, that is in trials for brain atrophy in MS. Also, Oregon Health & Science University did a study on alha liopic acid for secondary progressive MS and noted reduced rate of atrophy in brain.

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