Recognition and Awareness of Spasticity in Multiple Sclerosis – Optimizing the Patient/Clinical Dialogue - SEEN-MSS Survey

Background: It has been well documented that spasticity, a complex and multidimensional symptom of multiple sclerosis (MS), can negatively impact mobility and many other aspects of daily living for people with MS. Although spasticity is common, people with MS and spasticity (PwMSS) may not recognize the characteristics of spasticity or have the language to describe their symptoms to their physician, leading to potential delays in diagnosis and treatment.

Objectives: We sought to understand how PwMSS recognize and describe their symptoms associated with spasticity, and how conversations with their physicians about these symptoms and spasticity are initiated.

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 PwMSS, 78% female, mean age 56.8 years. Participants had been diagnosed with MS 16.8 years (mean) earlier, and spasticity symptoms had been present for 11.5 years (mean). Between MS diagnosis and spasticity onset, 65% of PwMSS felt minimally or not prepared for the possibility of developing spasticity and were unaware that spasticity would manifest as part of MS. Although 91% reported experiencing muscle spasms, only 69% used “muscle spasms” themselves to describe their symptoms. Other common descriptors included “muscle tightness,” “stiffness,” “cramping,” and “pain.” Many PwMSS (60%) reported being confused by their symptoms and did not recognize them as spasticity. After developing symptoms, 78% proactively initiated a discussion with their physicians, 52% wished they had spoken to their physician sooner, and 42% reportedly delayed the conversation by a year or longer. Respondents reported that during these discussions, physicians used the term “spasticity” two-thirds of the time.

Conclusions: This survey highlights that PwMSS may lack awareness that spasticity may manifest as part of MS and have uncertainty about how to describe symptoms and whether they should initiate a discussion with their physician. The results emphasize that physicians and patients may benefit from use of a common language and underscore the importance of education, enabling earlier recognition, diagnosis, and treatment of spasticity in MS.