Background: Spasticity, a complex and multi-dimensional symptom of multiple sclerosis (MS), occurs in up to 80% of those with MS. It is well documented that spasticity can negatively impact mobility and activities of daily living for people with MS. However, the impact of spasticity on other important aspects of life, such as emotional health, social interactions, and self-image, are not well understood in people with MS and spasticity (pwMSS).
Objectives: We sought to understand the comprehensive impact of spasticity in pwMSS in the physical, functional, emotional, and social domains.
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 April 2021. Analysis was performed using descriptive statistics.
Results: The survey was completed by 961 adult pwMSS; 78% female, mean age 56.6yrs (SD±10.5). Participants reported a mean of 16.3 years (SD±9.7) from diagnosis and had been experiencing spasticity symptoms for 11.1 years (SD±9.6). Self-reported Patient Determined Disease Steps demonstrated a wide spectrum of disability; range 1 (mild disability) to 7 (wheelchair/scooter). Spasticity was one of the top five most problematic symptoms for 72%. Spasticity limited nearly all participants from performing daily activities (92%) including walking, stair climbing and household activities. Spasticity caused pain for most pwMSS (93%) and negatively impaired their ability to sleep (89%). Emotional well-being was negatively impacted by spasticity in the majority of participants (88%). PwMSS felt spasticity fostered a sense of dependence (62%), made them feel isolated (40%), and caused a decline in self-confidence (75%), self-image (71%), and feeling of social connection (62%). Frustration was ranked as the most frequent emotion associated with spasticity in 27% and in the top five emotions for 68%. Other top five emotions experienced by pwMSS due to spasticity included fear of falling (39%), limited ability to relax (35%), a sense of helplessness (27%), and decreased confidence (23%).
Conclusions: This survey reveals the complex and wide-reaching negative impact of spasticity on multiple aspects of life for pwMSS. These results emphasize the need to look beyond the physical impacts of spasticity to fully understand the burden of spasticity for pwMSS.