What’s Top of Mind for People with Multiple Sclerosis?
September 15th, 2019
Survey Shows Americans Living with MS Remain Concerned with Disease Progression, Effect on Finances, Job Performance
New Research from Can Do MS and EMD Serono Identifies Financial Planning and Staying in the Workplace as Critical Concerns in Managing Unpredictable Disease
Avon, Colo. (September 2019) – A new survey of people living with multiple sclerosis (MS) highlights a community that faces the unpredictability of the disease, concerned about disease progression, how it will affect financial planning, and the impact that MS has on their ability to maintain employment.
The survey, conducted on behalf of Can Do MS and commissioned by EMD Serono, the biopharmaceutical business of Merck KGaA, Darmstadt, Germany, in the U.S. and Canada, provides an analysis of the experience of a community living with a disease that is not always well understood by the general population. MS is a disease in which the body’s immune system acts abnormally and causes damage to the central nervous system, resulting in a variety of neurological symptoms, often severe, including chronic fatigue, dizziness, vision problems, and difficulty walking.
More than 75 percent of individuals with MS surveyed expressed concern about how their disease will progress in the future, with 51 percent listing this as their greatest worry. Over sixty percent say they are concerned about how they will manage their symptoms. Approximately two-thirds of MS patients – and 72 percent of their support partners – say they need more information on how to help manage the disease.
“There are now nearly one million Americans with MS, and it is increasingly clear that these men and women and their families are uneasy not just about their futures, but about how they are going to manage their day-to-day lives,” said Lisa Mattis, chief executive officer of Can Do MS. “While the development of new therapies must be a priority, so is improving the awareness and access to information on how to manage their MS so that they can focus on family, friends and staying as healthy as possible.”
Other key findings from the survey include:
- More than 40 percent of MS patients have left their job or the workplace altogether as a result of the disease or symptoms of MS, while nearly half say their condition is substantially affecting their job performance.
- Nearly one-third of those surveyed says they are significantly concerned about their financial planning in light of an uncertain health future.
- Nearly seven of 10 respondents said they fear losing their independence or control over important aspects of their life as a result of the disease.
- On a positive note, more than half of those surveyed said their condition has made them increasingly resilient in the face of challenges and has led them to make healthier lifestyle decisions.
“What we are seeing, and this survey confirms, is a growing population of people with MS and support partners who are working to manage a chronic, unpredictable disease that affects their daily lives as well as their ability to envision what the future holds, said Rosalind Kalb, PhD, Senior Programs Consultant, Can Do MS. “My concern is that too many of these individuals and families are not accessing what they need - whether it’s access to accurate, up-to-date information, MS specialty care, essential medications, or emotional support. The greatest concern this survey highlights is that too many MS patients are living without the information and resources they need.”
About the survey
The survey was conducted online by Lake Research Partners survey on behalf of Can Do MS and made possible through financial support from EMD Serono between January 15 and February 15, 2019. The survey results reflect input from 465 people with MS and 74 support partners. Participants were recruited via email from Can Do MS’s membership database. The sample was stratified by gender, region, and age to reflect the demographic composition of Can Do MS membership. The margin of error for the patient sample is +/- 4.5% and the margin of error for the support partner sample is +/- 11.4%.
About Can Do MS
A national nonprofit organization based in Avon, Colo., Can Do MS delivers health and wellness education programs on exercise, nutrition, symptom management, and motivation to help families living with MS thrive. For more information, visit the organization’s website at CanDo-MS.org or call 800-367-3101.
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