Researchers set out to document the experiences and satisfaction of people regarding diagnosis and management of multiple sclerosis spasticity. The study’s authors found that despite the available spasticity treatments, patients still report a need for improvement.

Spasticity is a notoriously unyielding symptom for almost 80 percent of people with MS. Available treatments frequently offer poor tolerability or only minimal relief. Deeper insight into individualistic experiences may help to refine clinical approaches so as to better meet treatment goals.

In March 2023, a national team of researchers conducted a 37-item online survey. Participants were recruited with the help of MS Focus: the Multiple Sclerosis Foundation. Data was aggregated and analyzed to be further utilized within a CME activity.

Results were obtained from 239 respondents experiencing MS spasticity. At the time of first appearance of spasticity symptoms, 63 percent reported having relapsing-remitting MS, 10 percent secondary progressive, 8 percent primary progressive, and 4 percent unsure or other. Fifteen percent did not yet have an MS diagnosis. For nearly half of the respondents, spasticity onset was within five years of MS diagnosis.

Half the respondents initiated the discussion of spasticity with their MS clinicians, and most did not receive the diagnosis until symptoms were moderate (44 percent) or severe (14 percent). Only 49 percent of people said they are asked about spasticity at every appointment, while 20 percent and 21 percent, respectively, said these queries occur every so often or not at all. Additionally, 30 percent reported undergoing formal assessments, while 26 percent claimed they are never used.

Most individuals (68 percent) were treated with pharmacological therapies, commonly oral baclofen (87 percent), gabapentin (51 percent), and tizanidine (42 percent). Several symptom improvements (e.g., pain, walking, insomnia) were reported, but 29 percent of respondents felt their treatment does not improve their ability to engage in any daily activities. 

More than half of the individuals (58 percent) reported never being offered botulinum toxin. Of the 15 percent who tried Botox, 73 percent did so as third-line or later with 19 percent failing four or more prior agents. Nearly half (44 percent) of users felt it was among the top three most effective agents for treating spasticity but also that symptoms would reappear earlier than 12 weeks (46 percent). 

More than a third of respondents (39 percent) reported trying medicinal or recreational cannabis products to help treat spasticity. A small percentage (16 percent) reported being prescribed such products by a healthcare professional (HCP). More than half (58 percent) of those trying cannabis products found them more helpful than other spasticity treatments. Nearly (45 percent) reported they do not plan to discuss cannabis use with their MS clinician. 

Spasticity may occur early in MS and be underassessed by many clinicians. Despite available spasticity treatments, patients still report a need for improvement – and many pursue nontraditional therapies such as cannabis, often without the guidance of a HCP. Further exploration of optimal therapeutic strategies for MS spasticity is warranted.

The findings were presented at the ninth annual Americas Committee for Treatment and Research in Multiple Sclerosis Forum 2024, in West Palm Beach, Fla.