BARCELONA—Initial findings from a global initiative called vs.MS were presented at the 31st Congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS). Sponsored by Genzyme and aimed at fostering better informed care, the survey aimed at uncovering the often unspoken emotional and physical challenges faced by patients living with relapsing-remitting multiple sclerosis (MS) and their caregivers.
The vs.MS survey was developed with input and guidance from a steering committee of leading global neurologists specializing in MS. The online survey addressed topics such as progression and disability, cognitive challenges, relationship and intimacy issues, emotional burden, fatigue and sensitivity, bladder and bowel challenges, and the impact of MS on careers.
The vs.MS survey was fielded among more than 1,500 people in seven countries, including patients with relapsing-remitting MS and their caregivers.
An initial set of data from the vs.MS global survey elucidate the impact that the disease may have on various aspects of day-to-day life for people living with relapsing-remitting MS. For example, half of respondents feel their ability to progress in their career has changed for the worse since they were diagnosed with relapsing-remitting MS, and 40% are concerned about being able to keep their job.
The vs.MS survey also revealed the effect of MS on the emotional well-being of those living with the disease and their caregivers. For example, more than half of respondents living with relapsing-remitting MS feel lonely or isolated because of their MS, while more than half of caregivers do not discuss their fear of MS progressing to avoid upsetting the person they care for.
“The results of this global survey offer a unique look into the realities of relapsing MS, including the challenges that people living with MS and their care partners deal with on a daily basis,” said Barry Singer, MD, Director of the MS Center for Innovations in Care at Missouri Baptist Medical Center in St. Louis, and a vs.MS steering committee member. “We are hopeful that insight into the daily struggles of those living with MS will result in better disease management.”
While at ECTRIMS, Genzyme brought together people from across the MS community—people living with MS, health care providers specializing in the disease, and advocacy groups—to review the full vs.MS survey findings and begin developing a program that will be introduced to the community.
In the coming months, Genzyme will reveal the full vs.MS data set and partner with the MS community to encourage behavior and attitude shifts in an effort to yield better outcomes for those affected by the disease.