Variability of Spasticity in Multiple Sclerosis – Results from SEEN-MSS, a Large-Scale, Self-Reported Survey

Background: Spasticity is a common and debilitating symptom experienced by people with multiple sclerosis (MS), and it can have a discernible negative impact on overall well-being and multiple aspects of daily functioning. However, the experience of spasticity varies among people with MS and spasticity (PwMSS), and the variable and unpredictable nature of spasticity has not been well characterized.

Objectives: We sought to understand how PwMSS experience and describe the variability of symptoms associated with spasticity, identify specific spasticity triggers, and describe how PwMSS manage the variability of spasticity and its impact on their daily lives.

Methods: SEEN-MSS (Symptoms and Emotions Exploration Needed in Multiple Sclerosis Spasticity), a cross-sectional, online survey, was developed in collaboration with three US-based MS advocacy organizations. The survey included multiple choice and rank order questions and was completed by US-based PwMSS from February to May 2021. Analysis was performed using descriptive statistics.

Results: The survey was completed by 1,177 adult (mean age 56.8yrs) PwMSS, 78% female. Participants had received their diagnosis of MS 16.8 years (mean) earlier and had been experiencing spasticity for 11.5 years (mean). The majority (80%) of PwMSS experience spasticity daily: for 34% spasticity is constant, while 40% describe multiple periods of spasticity during each day. Spasticity varies throughout the day in severity and duration for 70% and day to day for 63%. Spasticity is triggered by a range of factors, commonly fatigue (52%), physical activity (49%), heat (45%), and stress (43%). PwMSS reported spasticity to be worse in the evening (31%), overnight (18%), morning (17%), and afternoon (4%), compared with equally severe throughout the day (30%). Day to day, 90% of PwMSS reported that they were not able to predict when their spasticity would occur or how severe it would be, and 65% shared that the day-to-day variability prevents them from doing things they would like to do. Half of PwMSS (50%) reported that they alter their medication dose and frequency depending on their spasticity symptoms on a given day.

Conclusions: This survey highlights that most PwMSS experience spasticity every day and that it is either constant or intermittent, negatively affecting their daily lives. The results emphasize that the variable nature of spasticity and its lack of predictability necessitate customizable treatments, based on the severity and duration of spasticity symptoms.