Abstract Details

Title Beyond the Physical Symptoms of Spasticity for People With MS Spasticity: Results From SEEN-MSS, a Large-scale, Self-reported Survey

Topic Multiple Sclerosis

Presentation(s) P10 - Poster Session 10 (8:00 AM-9:00 AM)

Poster/Presentation
Number 12-011

Background Spasticity occurs in up to 80% of PwMS and can negatively impact mobility and activities of daily living. The impact of spasticity on emotional health, social interactions, and self-image is not well understood.

Objective To understand the physical, functional, emotional, and social impact of spasticity in people with MS spasticity (PwMSS).

Design/Methods SEEN-MSS (Symptoms and Emotions Exploration Needed in Multiple Sclerosis Spasticity) was a cross-sectional, online survey completed by US-based PwMSS from February to April 2021. Analysis was performed using descriptive statistics.

Results

The survey was completed by 1177 adult PwMSS; 78% female, mean age 56.8 years (SD±10.7). Mean time from diagnosis was 16.8 years (SD±10), and participants reported experiencing spasticity symptoms for 11.5 years (SD±9.7). Self-reported Patient Determined Disease Steps demonstrated a wide spectrum of disability; range 1 (mild disability) to 7 (wheelchair/scooter). Spasticity was 1 of the top 5 most problematic symptoms for 72% of participants. Spasticity limited nearly all participants from performing daily activities (92%), including walking, stair climbing, and household activities. Spasticity caused pain for most PwMSS (92%) and negatively impaired their ability to sleep (89%). Emotional well-being was negatively impacted in most participants (86%). PwMSS felt spasticity fostered a sense of dependence (61%), made them feel isolated (40%), and caused a decline in self-confidence (75%), self-image (70%), and feelings of social connection (62%). Frustration was the most frequent emotion associated with spasticity in 27% of participants and in the top 5 emotions for 68% of participants. Other top 5 emotions experienced by PwMSS due to spasticity included fear of falling (39%), limited ability to relax (35%), sense of helplessness (26%), and decreased confidence (23%).

Conclusions This survey reveals complex and wide-reaching negative impacts of spasticity for PwMSS. These results emphasize the need to look beyond the physical impacts of spasticity to fully understand the burden of spasticity for PwMSS.

Authors/Disclosures
Scott D. Newsome, DO, FAAN (Johns Hopkins Hospital) PRESENTER	Dr. Newsome has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Biogen. Dr. Newsome has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Genentech. Dr. Newsome has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Novartis. Dr. Newsome has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Bristol Myers Squibb. Dr. Newsome has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for TG Therapeutics. The institution of Dr. Newsome has received research support from Biogen. The institution of Dr. Newsome has received research support from Genentech/Roche. The institution of Dr. Newsome has received research support from Department of Defense. The institution of Dr. Newsome has received research support from Patient Centered Outcomes Research Institute. The institution of Dr. Newsome has received research support from National MS Society. The institution of Dr. Newsome has received research support from The Stiff Person Syndrome Research Foundation. The institution of Dr. Newsome has received research support from Lundbeck. The institution of Dr. Newsome has received research support from Sanofi. Dr. Newsome has received personal compensation in the range of $10,000-$49,999 for serving as a Lead PI for Clinical Trial with Roche.
Ben W. Thrower, MD (Shepherd Center)	Dr. Thrower has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Abbvie. Dr. Thrower has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Genentech. Dr. Thrower has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Horizon. Dr. Thrower has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for BMS.
Barry A. Hendin, MD, FAAN (Phoenix Neurological Associates Ltd)	Dr. Hendin has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Biogen, Genentech, Genzyme, Novartis ,EMD Serono,Alexion. Dr. Hendin has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Biogen., Novartis Genentech, Genzyme, EMD Serono, Alexian. Dr. Hendin has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Biogen. EMD Serono Genentech Genzyme Novartis Alexian. Dr. Hendin has received personal compensation in the range of $10,000-$49,999 for serving as an officer or member of the Board of Directors for Multiple sclerosis association of America. The institution of Dr. Hendin has received research support from Biogen. Genentech.
Joanne M. Wagner, PhD, PT	Dr. Wagner has received personal compensation for serving as an employee of Xenon Pharmaceuticals. Dr. Wagner has received personal compensation for serving as an employee of Biogen. Dr. Wagner has stock in Biogen. Dr. Wagner has stock in Xenon Pharmaceuticals.
Sherry Danese (Outcomes Insights)	No disclosure on file
Jenifer Patterson, NP (Catalyst)	Ms. Patterson has received personal compensation for serving as an employee of Greenwich Biosciences .