Do you participate in NARCOMS surveys? That would be the North American Committee on Multiple Sclerosis and their patient data surveys that are generated twice a year and is a longitudinal study tracking our MS and various symptoms and progression. In addition to their regular surveys, they will on occasion conduct special targeted surveys and such was the case with a survey regarding attitudes toward marijuana use among people with MS. Stacey Cofield, PhD, is the lead investigator for this project and I had the opportunity to talk with her about the survey results at the Consortium for MS Centers annual meeting, held in Indianapolis.
The survey was created as a response to NARCOMS participants’ suggestion that they include questions about medical marijuana use in their surveys. The information entered through the NARCOMS registry is linked to our personal records, and to address the privacy concerns about gathering information on a drug that is still illegal in many parts of the US, they asked the questions via SurveyMonkey, an online survey tool. I am a member of NARCOMS and did complete this survey in 2014.
Dr. Cofield said from the number of email requests sent, they had a surprisingly high response rate of 46%, the number of responses was 5,600 out of 12,600 active NARCOMS participants. Following the patterns as seen through other surveys, the number of women who answered the questions was 78%, a much greater percentage than men. She said they were surprised so many people were willing to discuss marijuana as an MS treatment.
The results for the survey were published in NARCOMS NOW, Winter 2015 issue.
So what did Dr. Cofield find from this study?
- 91% of all respondents believe marijuana should be legalized.
- 58% of the people who believe marijuana should be legalized think it should be legal only for people with a prescription.
She said part of the motivation to conduct this study comes from often when she hears discussions about the legal use of medical marijuana, what is left out is the patients’ opinions. From the people who answered, 53% of people said they had considered using marijuana, but only 20% had discussed this with their doctor.
Dr. Cofield suggests that doctors need to be told through survey responses such as this one, that people are considering marijuana for their MS and want to have this discussion with the doctor, particularly if the doctor initiates the conversation, indicating it is a safe topic to talk about.
Another question discussed ways to take marijuana if it were legal and 47% of the people said they would prefer to take a pill, while 28% said they would prefer a lotion or some type of skin patch. Eighteen percent said they would not take marijuana in any form, even it were legal.
The median age of the people who answered the questions was 55.5 years, and not surprisingly the majority of people have Relapsing Remitting MS. The survey also asked respondents to rate their disease using the Patient Determined Disease Steps (PDSS). From the responses, Dr. Cofield was able to see that the higher the disability level, the more likely the person would be to use marijuana, and the more likely marijuana user would be a male with Primary Progressive MS.
She will be presenting her initial work as a poster presentation at the conference and is working on the submission to have this published in a peer-reviewed journal yet this year. The study was self-funded by NARCOMS. I asked what she might like to expand on with future looks at the use of marijuana by people with MS, and Dr. Cofield would like to look at how it might change spasticity, pain and cognitive functions. She sees this as a very important topic to further explore, and think deeper about the implications of medical marijuana, including the possibility of prescription insurance covering its costs in the future.
If you want to enroll in the NARCOMS registry and help further MS research on the subject of medical marijuana and many more topics, you can do so at http://narcoms.org.
Wishing you well,