Genzyme recently announced a novel worldwide initiative called vs.MS, whose goal is to increase awareness of the psychical and emotional toll of relapsing multiple sclerosis (RMS) on patients and their caregivers. To enhance the comprehension of the full burden of RMS, Genzyme conducted a large-scale survey of more than 1,500 individuals with RMS and caregivers in seven different countries. The initial survey data will be presented during the 31st Congress of the European Committee on the Treatment and Research in Multiple Sclerosis (ECTRIMS) taking place in Barcelona, Spain from the 7th until the 10th of October, 2015.
“As part of our ongoing commitment to help improve the lives of people living with MS, we are proud to introduce this new global initiative in collaboration with patients and caregivers,” said Dr. Darlene Jody, Head of MS Medical Affairs at Genzyme in a press release.“At Genzyme, we believe that when we know more, we can do more. The experiences uncovered through the vs.MS survey will help shed light on the physical and emotional toll RMS can have, and we look forward to developing a program that may help drive a more open exchange for better informed care.”
During the conference, Genzyme hopes to bring together leaders from the MS Community that represent MS patients, healthcare professionals specialized in the condition and support groups, to evaluate the full findings of the vs.MS global survey and start to develop a program to the community.
Genzyme will be presenting an interactive digital experience at their conference booth and share the initial survey results through the @GenzymeCorp Twitter handle. Each participation by a visitor to their booth, and every time someone retweets using the hashtag #vsMS, the company will donate 5 Euros to support the research efforts of the Multiple Sclerosis International Federation (MSIF).
The vs.MS survey results will provide further insights into the impact of the disease on diverse aspects of the daily live. As an example, half of the survey participants reported feeling that their capacity to advance in their career has been compromised since they were diagnosed with RMS, and 40% of the responders declared being worried about keeping their job.
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Results from the survey also reveal the impact of RMS on the emotional well-being of patients, as well as of their caregivers. More than half of the participants with RMS in the survey reported feeling isolated or lonely due to the disease, whereas more than half of the caregivers do not assume their distress related to MS progression to avoid distressing 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 Dr. Barry Singer, MD, Director of The MS Center for Innovations in Care at Missouri Baptist Medical Center in St. Louis, MO, 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.”
The survey was developed with guidance from a directing committee of MS experts, and addressed issues like fatigue and sensitivity, intimacy and relationships, cognitive challenges, emotional burden, progression and disability, bowel and bladder challenges, and MS impact on career.
Genzyme plans to reveal in the next months the full survey findings and to collaborate with the MS Community in order to stimulate an attitude and behavior change for an improvement on the patient’s clinical outcomes.