Survey participants reported need for better education on how brain atrophy affects multiple sclerosis progression and cognitive loss.
Patients with multiple sclerosis (MS) want to be better educated on how brain atrophy affects disease progression and cognitive loss, according to new survey findings.
The survey, which was conducted by the Multiple Sclerosis Association of America and sponsored by Celgene, examined participants’ knowledge about the effects of MS on the brain, including brain atrophy, and how this issue is being discussed between patients and health care professionals. The survey included more than 1300 individuals with MS or someone responding on their behalf.
Typically, brain atrophy can be used as a marker to predict cognitive and physical decline in patients with MS, highlighting its critical role in progression indicator. However, many of the survey participants did not feel like they received adequate information about how brain atrophy affects their disease.
Based on the findings, respondents indicated high interest in better understanding the role of brain atrophy, citing MS-related cognitive issues as one of their top concerns. According to the survey data, maintaining cognitive function is the second most common concern for respondents, with 27% reporting it as the most important consideration. The prevention of physical disability was reported as the top concern for 45% of respondents.
Sixty-three percent of participants reported that they have never talked to a member of their medical team about brain atrophy. Although almost 90% of respondents have an MRI at least every 3 years, only 20% said that their physicians talked to them about brain atrophy when discussing the MRI results.
Additionally, the findings underscored a need for more educational materials and initiatives for patients with the disease. Only 20% of respondents were either moderately or very satisfied with the amount of information available to them on how to potentially prevent brain atrophy.
“Brain atrophy is strongly correlated with development of disability and neuropsychological impairment in patients with multiple sclerosis,” Rohit Bakshi, MD, MA, 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 and Radiology at Harvard Medical School, said in a press release.
“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.”
The survey results were presented at ECTRIMS 2018.
Survey Results Presented at ECTRIMS Reveal People with Multiple Sclerosis Want More Information on Brain Atrophy [news release]. Celgene’s website. https://ir.celgene.com/press-releases/press-release-details/2018/Survey-Results-Presented-at-ECTRIMS-Reveal-People-with-Multiple-Sclerosis-Want-More-Information-on-Brain-Atrophy/default.aspx. Accessed October 16, 2018.