We commissioned the MS MindSet survey to explore what everyday life with MS is like and identify real needs within the community.
Who We Talked To
More than 800 members of the MS community living in the U.S. participated in this national survey.
The Everyday with MS
Results from the survey showed that the unpredictability of the disease was a major challenge for people affected by MS, impacting their daily lives and planning for the future.
At least half of respondents living with MS reported these symptoms impacted their daily lives; many support partners were affected too.
Fatigue
People with MS
Support Partners
Difficulty Walking
People with MS
Support Partners
Numbness/Tingling
People with MS
Support Partners
Weakness
People with MS
Support Partners
Spasticity
People with MS
Support Partners
Unpredictability of the disease caused both people with MS and their support partners to worry about symptoms they could possibly experience in the future.
After physical symptoms, 77% of people with MS worried most about cognitive changes, while 72% of support partners worried more about emotional changes, such as depression and mood changes.
The unpredictability of MS also led to missing out on or avoiding everyday activities.
Summertime Outings
Social Outings
Shopping
Ongoing Social Commitments
Sporting Events/Exercise
Family Outings
Vacations
Help Wanted for Everyday Needs
When MS symptoms strike unexpectedly, about 80% of people with MS and their support partners wished for help with everyday chores; however, many have never used an online service or app, or a free service from an MS advocacy organization or local group, to help with everyday tasks.
Additionally, 77% of people with MS and 84% of support partners have never used a free service from an MS advocacy organization or local group, such as transportation or homecare services.
Perceptions of MS Beyond the Everyday Unpredictability
While people living with MS and their support partners are knowledgeable about the disease, the MS MindSet Survey showed a few areas where more education might be helpful.
Though most people with MS agree that MRIs are important to help monitor disease activity when there are no visible symptoms, nearly 50% are unaware that MRIs play a role in treatment decisions.
Roughly 35% of people with MS and the same amount of support partners surveyed are unaware that MS relapses can be predictive of progression later.
About 40% of people with MS and the same amount of support partners are unaware that MS can cause brain volume loss or shrinkage.
About the U.S. MindSet Survey: KRC Research surveyed more than 800 members of the MS community over the age of 18 living in the U.S. between July 8 and September 16, 2016. This is unpublished data.
ESB/032116/0048(1)