What are the goals of this study?
MRI is an important tool for monitoring and managing MS and can help show how the disease is progressing or how well an MS treatment is working. People with MS are encouraged to take an active role in their disease management, but may not know how to access their MRI images or understand what they mean.
Who led the study and what was the funding source?
The study was led by Lars Costers at Icometrix and Hollie Schmidt at iConquerMS with internal funding.
How was the study conducted?
We developed an online survey which iConquerMS members were invited to take. The survey covered topics such as frequency of MRI scans, interest in the information provided by MRIs, ability to access MRI images and view them, and attitudes toward sharing MRIs with researchers. In all, 876 people with MS took the survey.
What did we learn from this study?
Key study findings include:
- Only 55% of the people taking the survey have an MRI scan at least once a year
- 73% had requested or received an electronic copy of their MRI; 27% had never received one
- Of those who had looked at their images on their own, 13% understood them completely, 54% understood them somewhat, and 33% didn't understand them very much or at all
- Barriers to viewing images included not knowing how to view the images, not having the necessary software, and not knowing how to interpret them
- Almost all people taking the survey (95% or more)
- were interested in knowing about changes from one MRI to the next
- wanted to know if their MRI was performed according to current guidelines
- were willing to share their MRIs with researchers
What do these study findings mean?
These findings indicate that although some people with MS are able to view and understand their MRI images, most would need education and support to do so. There is strong interest in knowing what the MRIs show in terms of changes over time, and in whether guidelines are followed in performing the MRIs.
What will we do next with this information?
Icometrix is making use of these results as they develop tools for people with MS, including applications for viewing MRIs. You can learn more at their website: icometrix.com
Video: "Chat with Chat" interview with Annabel Descamps
Presentation: Results shared at the 2021 ACTRIMS conference