Background: Evidence suggests that people with multiple sclerosis and spasticity (pwMSS) experience multiple concurrent symptoms that negatively impact daily functioning and quality of life. However, the overall symptom burden and the importance of symptom management for pwMSS have yet to be fully characterized.
Objectives: We sought to understand the breadth and most problematic symptoms experienced by pwMSS and the importance of symptom management for pwMSS.
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 was completed by US-based pwMSS, recruited from these MS advocacy organizations, from February to April 2021. Participants completed the survey of multiple choice and rank order questions. Analysis was performed using descriptive statistics.
Results: The survey was completed by 961 adult pwMSS; 78% female, mean age 56.6 years (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 (±9.6). Self-reported Patient Determined Disease Steps demonstrated a wide spectrum of disability; range 1 (mild disability) to 7 (wheelchair/scooter). The symptom burden was high, with 17 different co-occurring symptoms reported by pwMSS. More than 60% of participants reported at least eight additional symptoms co-existing with spasticity. Spasticity was ranked as the single most problematic symptom in 17% of pwMSS and was one of the top five most problematic symptoms for 72% of pwMSS. Other top five most problematic symptoms experienced by pwMSS included fatigue (59%), difficulty walking (45%), and pain (40%). Two-thirds (68%) of participants reported their primary treatment goal was slowing disease progression versus managing symptoms (32%). However, when asked to consider their day-to-day treatment goals, the importance of managing symptoms (46%) was nearly as important as slowing disease progression (54%).
Conclusions: This survey highlights the substantial burden of symptoms for pwMSS, including spasticity, and the importance of symptom management on a day-to-day basis. These results emphasize the importance of proactive communication regarding the constellation of symptoms associated with spasticity and addressing the individual needs and treatment goals of pwMSS.