Survey Results Show Impact of MS in All Aspects of Life
Multiple sclerosis (MS) affects all aspects of life, from physical and mental health to relationships, and from work and finances to hobbies and holidays, according to results from an online survey conducted by the U.K.’s MS Trust.
Most respondents said they wanted more support to manage their fatigue, improve their emotional well-being and cognitive function, and to help other people understand MS.
These findings, highlighting the everyday struggles of people with MS in the U.K. and their support needs, were detailed in the report, “Life changing: the hopes and fears of the MS community in 2022.”
In its announcement, the MS Trust stated the report was released as part of its initiatives during this MS Awareness Week (April 25 to May 1) and that the results emphasize “the importance of our ongoing campaign to secure accessible care for people living with multiple sclerosis.”
The survey was developed with help from people living with MS through three online focus groups involving 13 MS patients and was focused on the disease’s impact on their lives. Patients had different types of MS, distinct backgrounds, and different life experiences.
After validation, the Trust shared the survey with MS patients across the U.K. via its mailing list and social media channels.
From Feb. 11 to March 7, 718 MS patients completed the survey. Most were female, 30 to 60 years old, from England, and diagnosed with relapsing-remitting MS. Half of the respondents had received their diagnosis before 2015, and two-thirds experienced symptoms for more than a year before being diagnosed.
Survey findings showed that MS had changed the lives of 95% of responders. The condition moderately to severely affected patients’ ability to complete daily tasks such as eating and dressing in 43% of participants, and to live independently in 40%.
Fatigue was the most commonly reported physical symptom of MS (96%), followed by altered skin sensations (such as tingling, burning, numbness; 94%) and balance issues (93%). Among cognitive symptoms, most patients reported mental fatigue (92%), and concentration and memory problems (86%).
The condition affected mental health or emotional wellbeing in 94% of patients, with anxiety being reported by 87% of responders, mood swings by 81%, and depression by 78%. For nine in 10 patients, MS had affected their self-esteem.
Two-thirds of patients said MS had affected their identity, and nearly two in five responders admitted having had suicidal thoughts.
In addition, the disease affected the work and career of 88% of patients. A little more than one-third (36%) reported having given up work or medically retiring, 29% reduced their responsibilities or hours at work, and 16% had changed their career due to MS.
This resulted in a reduction or loss of income for 39% of patients, and 70% of responders reported their MS had affected their overall financial status.
“Many people with MS are struggling with the double whammy of a reduced income at the same time they are facing increased costs because of their MS,” the MS Trust stated in its report, adding that patients “were worried about increasing costs in the future and making their finances last.”
One fifth of responders also reported they had experienced an unsupportive workplace.
In about three-quarters of patients, living with MS affected their relationships with loved ones and friends, as well as their sexual relationships. Nearly two-thirds admitted having become more reliant on a partner, friend, or family member, and 14% had ended a relationship with a partner because of the disease’s impact.
About 90% of respondents said the disease affected their hobbies and pastimes, with more than 75% reporting having reduced or stopped such activities, and 56% being unable to partake in activities they once enjoyed.
About half of the patients said their plans for the future had changed because of MS, most commonly regarding work and career, but also travel, holiday, and retirement plans.
Many patients were worried about the future impact of their MS on loved ones, especially partners and children, and “fearful that they would not have the support they needed in the future, including medical and social care support, particularly if something were to happen to their current carer,” the MS Trust stated.
Despite MS’s overall negative impact on people’s lives, many patients were not receiving the support they needed, with 88% of them reporting they feel unable to cope with their MS some or all of the time.
Nearly two-thirds of respondents to the online survey stated they needed more support managing their fatigue, 45% wanted more help with managing their mood or emotions, and another 45% with the cognitive impact of MS.
Half of the patients also wanted more support to help other people understand MS, because the ‘invisible’ nature of many MS symptoms “can make the impact hard to communicate to others, even family members or work colleagues,” the MS Trust stated.
Notably, the impact of MS was not always negative, with nearly three-quarters of patients reporting a greater appreciation of the positive aspects of their lives, and some having taken up new hobbies or made new friends as a result of their MS.
“The MS Trust believes that there is more that can, and should be, done for people with MS,” and “we will listen to what people with MS have told us and encourage other agencies to look at where they can make changes to their services to benefit people living with MS,” the MS Trust stated.
Also, “employers should have advice on how to best support employees with MS, and consider the impact of their working practices to ensure that the workplace is truly accessible,” the MS Trust added.
The MS Trust plans to reinforce their resources around areas that are priorities for MS patients and continue to train and support MS specialist nurses to improve MS services, which have been overstretched across the U.K., particularly after two years of the COVID-19 pandemic.
“We continue to run our information service which provides a lifeline for people dealing with the complex issues associated with MS when they are unable access other specialist support,” the MS Trust stated in its announcement.