People with multiple sclerosis (MS) used cannabis to manage various symptoms but often did not ask their doctor for guidance, survey data showed.
About one-third of patients surveyed in the North American Research Committee on Multiple Sclerosis () registry had tried cannabis for their MS symptoms, reported Robert Fox, MD, of the Mellen Center for MS at the Cleveland Clinic in Ohio.
Of those currently using cannabis, nearly half (47%) said their primary source of medical guidance for cannabis use was "nobody/self," Fox said during a presentation at the Consortium of Multiple Sclerosis Centers (CMSC) meeting.
"Many of our patients with MS use cannabis for treating symptoms of their MS. Despite this use, the source of information about cannabis is not well understood," Fox told .
"What was surprising about our survey is that even though cannabis is commonly discussed with providers, the most common source of medical guidance and information was not the healthcare provider," Fox continued.
"Indeed, 'nobody/self' was the most common source of medical guidance, followed by someone connected to the cannabis dispensary," he added. "This highlights significant opportunities for clinicians to take a bigger role in guiding people who use cannabis regarding its use in MS."
MS patients in the NARCOMS registry were invited to complete an anonymous online survey about using tetrahydrocannabinol (THC)-containing cannabis for their MS symptoms.
Of 6,934 MS patients invited to take the survey, 3,249 (47%) responded. Of those who responded, 31% reported using cannabis for MS symptoms. Overall, 20% of respondents (636 people) were classified as current users, meaning they had used cannabis for MS symptoms within 30 days of taking the survey.
Most current users (75%) had discussed cannabis with their physician, but the most frequent primary source of medical guidance for cannabis use was "nobody/self." Other sources of medical guidance included a dispensary professional (20%), an MS physician (12%), or a physician other than the MS provider (11%).
The most common target symptoms that patients used cannabis for were spasticity (80%), pain (69%), and sleep (61%). More than 95% said cannabis was very or somewhat helpful. Of current users, 51% said they used less cannabis than they otherwise might, mainly because of cost (54%) or lack of insurance coverage (47%).
The most preferred types of cannabis were equal THC and cannabidiol (31%) and high THC/low cannabidiol (30%). About a third (32%) of current users smoked, and 20% consumed edibles. The most common information sources used to determine what was in the cannabis product they used were dispensaries (45%), dealer/friends (31%), and product labels (27%).
Current users said they most often obtained their cannabis products from dispensaries (62%), a family member or friend (18%), or an acquaintance (13%). The most important factors in selecting a product were quality/safety (70%), access to preferred potencies/formulations (40%), and location close to home (39%).
The 69% of respondents who did not use cannabis for MS symptoms cited insufficient efficacy data (40%) or safety data (27%), legal concerns (25%), lack of insurance coverage (22%), or prohibitive cost (18%) as their primary reason.
A echoed earlier findings, showing that MS patients who used add-on nabiximols (Sativex), a cannabinoid oromucosal spray, had improvements in spasticity.
"Patients with MS are commonly affected by spasticity and current treatments do not adequately control spasticity," noted Jacqueline Nicholas, MD, MPH, of OhioHealth Multiple Sclerosis Clinic in Columbus, who is studying the effects of nabiximols on muscle tone in MS patients.
"As a result, some patients turn to unregulated CBD [cannabidiol] or medical marijuana, which may be of benefit, but have not been fully studied and dosing is not standardized," Nicholas told . "Nabiximols was shown to be beneficial in patients with MS and would serve as a CBD-THC pharmaceutical option that has been well studied in MS with a side effect and safety profile understood from clinical trials."
Nabiximols is approved for use in other countries, but not in the U.S. Several trials of nabiximols for spasticity in MS, including a , are underway, according to drugmaker GW Pharmaceuticals.
Disclosures
This study was sponsored by GW Research Ltd, U.K.
Fox and other researchers have consulted for, conducted studies funded by, or received honoraria for services provided to GW Pharmaceuticals. Some authors were employees of Greenwich Biosciences.
Primary Source
Consortium of Multiple Sclerosis Centers
Fox R, et al "Sources of cannabis information and medical guidance among people with multiple sclerosis: NARCOMS survey results" CMSC 2021; Abstract SXM08.
Secondary Source
Consortium of Multiple Sclerosis Centers
Fox R, et al "Prevalence of cannabis use and associated factors among people with multiple sclerosis: a 2020 NARCOMS survey" CMSC 2021; Abstract DXM07.