Recognition, Description, and Variability of Spasticity in Individuals With Multiple Sclerosis and Potential Barriers to Clinician-Patient Dialogue: Results From SEEN-MSS, a Large-Scale, Self-Reported Survey.

Background: The experience with spasticity varies among individuals with multiple sclerosis and spasticity (MSS), as they may not recognize it as spasticity or have the language to describe their symptoms. This can lead to potential delays in diagnosis and treatment.
Methods: Symptoms and Emotions Exploration Needed in Multiple Sclerosis Spasticity was an online survey completed by 1177 individuals with MSS in 2021. It sought to capture symptoms of spasticity, variability of symptoms, specific spasticity triggers, and how conversations with physicians were initiated.
Results: The mean age of the cohort was 56.8 years and it was 78% women. Prior to spasticity onset, 65% of respondents felt minimally prepared or unprepared for possibly developing spasticity and were unaware that spasticity manifests as part of MS. Eighty percent experienced spasticity daily, which was variable in severity and duration. Spasticity was triggered by a range of factors and 90% of those surveyed were unable to predict when it would occur or its severity. Day-to-day variability of spasticity prevented 65% of respondents from doing things they wished to do. Sixty percent were confused by their symptoms, not recognizing them as spasticity. Although 91% reported experiencing muscle spasms, only 69% used "muscle spasms" to describe their symptoms. Other descriptors included "muscle tightness," "stiffness," "cramping," and "pain." After recognizing spasticity, 78% proactively initiated discussions with their physicians, 52% wished they had done so sooner, and 42% delayed the conversation by up to or more than a year.
Conclusions: Results emphasize the variable nature of spasticity and the lack of a common language to describe symptoms, underscoring the importance of education, earlier recognition, and customized treatments tailored to the severity and duration of spasticity symptoms.
Competing Interests: FINANCIAL DISCLOSURES: Dr Thrower has received consultant fees from Sanofi Genzyme and is a member of the speakers’ bureaus of Bristol Myers Squibb, Genentech, and Horizon Therapeutics. Dr Newsome has received consultant fees for scientific advisory boards from Biogen, Bristol Myers Squibb, EMD Serono, Genentech, Greenwich Biosciences, Horizon Therapeutics, and Novartis; is an advisor for Autobahn Therapeutics; is the study lead primary investigator for a Roche clinical trial; was a clinical adjudication committee member for a MedDay Pharmaceuticals clinical trial; and has received research funding (paid directly to institution) from Biogen, the Department of Defense, Genentech, the National Multiple Sclerosis Society, the Patient-Centered Outcomes Research Institute, Roche, and The Stiff Person Syndrome Research Foundation. Dr Hendin has received research funding and consultant fees for advisory boards from and is a member of the speakers’ bureaus of Biogen, Bristol Myers Squibb, EMD Serono, Genentech, Novartis, and Sanofi Genzyme. Dr Chinnapongse was an employee of Jazz Pharmaceuticals, Inc. Ms Danese has received consultant fees from Jazz Pharmaceuticals, Inc. Ms Patterson was an employee of Jazz Pharmaceuticals, Inc.
(© 2024 Consortium of Multiple Sclerosis Centers.)