This article originally appeared in the National MS Society’s website.
Loss of independence was the top concern in a survey of 1,323 people with MS conducted by the MS Coalition, a network of MS organizations including the National MS Society. Other major concerns were the financial and emotional impacts of MS. Studies such as these are critical to providing personalized solutions for people living with MS. See below for opportunities to participate in other research studies, and for help with managing MS.
Background: Research on the impact of MS is generally gathered from databases of patient information, but does not always include the perspective of people with the disease. The MS Coalition, a collaborative network of independent MS organizations including the National MS Society, advocates for people affected by MS. The MS Coalition administered a survey to understand the perspective of people with MS on impacts of the disease, and in particular, disease-modifying therapies (DMTs).
The Survey & Results: Participants were recruited by the member organizations of the Coalition, via email and social media. In total, 1,323 people responded to the survey. Most (78%) were female, white, had relapsing-remitting disease, and were insured via commercial insurance, with an average age of 55. Nearly all participants (97%) had used a DMT, with 73% having used two or more.Respondents were “concerned” or “very concerned” about several aspects of living with MS: 80% expressed concerns about loss of independence,
- 65% were concerned with the financial impacts of MS
- 64% were concerned about the emotional impacts of MS (identity loss, stress from navigating healthcare, and financial strain)
- 57% worried about relationships
- 42% had career concerns.
People who had some level of disability were more likely to report concerns with all these areas.Out of pocket costs had led to treatment delays or discontinuation in 19% of respondents, and 30% indicated that their insurer had denied coverage for their DMT at some point.
- stress from medication costs
- insurance denials
- fear of losing health coverage.
The respondents also were given an opportunity to provide free text comments on the impacts of MS. Many comments focused on the stress of living with MS and navigating the healthcare system; others discussed the impact of symptoms and DMT side effects. For example:
- “Even with insurance, the cost of copays is a very significant part of my family’s expenses. There is a constant temptation to skip doses to stretch out the supply of my medication, which could possibly lead to much greater expenses to the insurance company, not to mention the toll on my health and the impact to my family.” – A person with RRMS
- “MS turned my life upside down. I lost my ability to drive, to work, to make friends, to have an active social life, to be in a partnership. I have lost my independence, and much of my identity. I do not really know who I am, or what my purpose is, and why am I still here? What for?” – A person with SPMS
Why does this matter? Incorporating patient perspective is critical to finding solutions that can minimize the impacts of MS. Having an accurate understanding of the impact of MS can help researchers ensure that their work is relevant to people with MS. Healthcare providers and insurers can also use these findings to better meet the needs of the community. People with MS can lend their voices to such research via online surveys and patient registries.
