In the meantime, understanding how patients make decisions about their arthritis management, and how they track their symptoms and treatment, is important to make rheumatologists aware of what patients might be using in addition to prescribed medication.
CreakyJoints®, a Global Healthy Living Foundation patient community, will present five posters, some in partnership with major academic institutions, at the 2019 ACR/ARP Annual Meeting in Atlanta, GA (Nov. 8-12, 2019) that speak to the decisions patients make when treating and tracking their arthritis. In the poster “Legal Matters: Attitudes Regarding Marijuana for Medical Use Among Patients with Rheumatic and Musculoskeletal Disease” (November 12, 2019 from 9-11am ET), an ArthritisPower® research registry study reports that among people with arthritis responding to a survey (n=1,059 participants) who use marijuana for medical use (MMU, 37%), the majority (77%) live in a state where marijuana is legal for medical reasons, though only 40 percent have an actual medical marijuana card to legally purchase it. Among the respondents who had never used MMU (63%), illegality (40%), potential impairment (24%), and not knowing where (21%) or how (20%) to obtain MMU (legally or not) were cited as top reasons for not using it. Of respondents who live in states where marijuana is medically legal, most (68%) had informed their health care provider (HCP) about their MMU use, whereas only slightly more than half (54%, p=0.02) informed their HCP in non-legal states.
“This study suggests that people with arthritis are trying and regularly using marijuana for what they perceive to be a medical purpose, regardless of whether they have a medical marijuana card to legally obtain it,” said W. Benjamin Nowell, Ph.D., Director of Patient-Centered Research at CreakyJoints and principal investigator of ArthritisPower. “But what is most concerning is that this study also showed that only two-thirds of current or past MMU users informed their health care providers about using MMU, with less than half perceiving that their doctors took it into consideration as part of their overall treatment regimen. This may be affected by the variable legal status of MMU, since people were less likely to talk to their doctor about MMU use in states where it’s illegal.”
Utilizing the ArthritisPower® research registry, which now includes more than 22,000 consented participants, the 77-item survey included 1,059 participants in the United States who were over the age of 18 and reported physician-diagnosed rheumatic or musculoskeletal disease. The survey also required participants to report their current health status (NIH PROMIS Global Health), their use and perceptions of MMU and cannabidiol (CBD) products, and their related information needs. CreakyJoints independently funded this study.
Seth Ginsberg, president and co-founder of CreakyJoints added, “What’s important to emphasize is that while marijuana (and CBD) usage is growing among people with arthritis and other chronic diseases, research about its safety and effectiveness lags far behind. The federal government needs to reschedule marijuana so that it can be studied via high quality clinical trials to better understand whether and how it might be used in conjunction with approved medications. In the meantime, understanding how patients make decisions about their arthritis management, and how they track their symptoms and treatment, is important to make rheumatologists aware of what patients might be using in addition to prescribed medication.”
Patients Appreciate Methotrexate, but May Also Track its Side Effects
Two posters detail how patients perceive and track their symptoms and experience on treatment, including side effects related to medication.
Due to both treatment- and cost-effectiveness, methotrexate (MTX) remains the first-line treatment for common forms of inflammatory arthritis, despite being associated with bothersome side effects such as nausea and fatigue, skin reactions, headaches, mouth sores and more serious, though rare, side effects such as liver toxicity and bone marrow suppression. In a poster titled, “Patient Beliefs and Perceptions of Methotrexate for the Treatment of Rheumatoid Arthritis and Psoriatic Arthritis (November 12, 2019, 9-11am),” the authors report that among adult arthritis patients responding to an ArthritisPower survey (n=371), 79 percent of those who previously took MTX but had discontinued it experienced one or more side effects and 58 percent of current MTX users also experienced one or more side effects. Fatigue was the most commonly reported side effect among respondents currently and previously taking MTX; those who discontinued MTX reported substantially more gastrointestinal effects such as nausea, abdominal pain and loss of appetite. Despite these side effects, among those currently taking MTX, most (65%) felt that it protected them from becoming worse and nearly half (43%) agreed that their life would be impossible without MTX. This study was conducted with support from Amgen Inc and with GHLF research funds.
Which symptoms are most important to arthritis patients in their experience and tracking of disease activity and treatment effectiveness? “Understanding which Patient-Reported Outcomes are Important to Rheumatology Patients: Findings from ArthritisPower,” (November 10, 2019, 9-11am) displays baseline observations about the patient-reported outcome (PRO) measures that were voluntarily selected by patients using the ArthritisPower research registry smartphone app. The authors found that the top three PRO measures chosen at baseline tracked fatigue (83%), pain (83%) and mental health (82%). Physical function (72%), social health (69%), sleep (65%), and morning joint stiffness (57%) were also selected by participants in this ArthritisPower substudy (n=253) who were prompted to select up to ten PRO measures they felt were important to track for their condition. This study was conducted with support from Eli Lilly and Company and with GHLF research funds.
“These findings provide valuable insights into the symptoms that rheumatology patients find most important as they deliberately take the time to track and assess them,” said Jeffrey Curtis, MD MS MPH, Marguerite Jones Harbert – Gene Ball Endowed Professor of Medicine, UAB Division of Clinical Immunology & Rheumatology and ArthritisPower co-principal investigator. “These results will help to inform the design of future patient-centric clinical trials and studies generating real-world evidence.”
The full list of CreakyJoints posters and oral presentations to be presented at the 2019 ACR/ARP Annual Meeting includes:
- Legal Matters: Attitudes Regarding Marijuana for Medical Use Among Patients with Rheumatic and Musculoskeletal Disease (Abstract: 2248)
- Patient Beliefs and Perceptions of Methotrexate for the Treatment of Rheumatoid Arthritis and Psoriatic Arthritis (Abstract: 2256)
- Understanding which Patient-Reported Outcomes are Important to Rheumatology Patients: Findings from ArthritisPower (Abstract: 435)
- Comparison of Medication New User Definitions in Multi-Specialty EMR Data (Abstract: 2067)
- Art for Arthritis: A New Approach (Abstract: PP06)
Created by CreakyJoints® and supported by a multiyear, multimillion dollar investment by the Patient-Centered Outcomes Research Institute (PCORI), ArthritisPower, with more than 22,000 consented arthritis patients, is the first-ever patient-centered research registry for joint, bone, and inflammatory skin conditions. The free ArthritisPower mobile and desktop application allows patients to track and share their symptoms and treatments while also participating in voluntary research studies in a secure and accessible manner. ArthritisPower Patient Governors serve as gatekeepers for researchers who seek to access registry data or solicit the community to participate in unique, voluntary studies. To learn more and join ArthritisPower, visit www.ArthritisPower.org.
CreakyJoints is a digital community for millions of arthritis patients and caregivers worldwide who seek education, support, advocacy, and patient-centered research. We represent patients through our popular social media channels, our website www.CreakyJoints.org, and the 50-State Network, which includes more than 1,500 trained volunteer patient, caregiver and healthcare activists.
As part of the Global Healthy Living Foundation, CreakyJoints also has a patient-reported outcomes registry called ArthritisPower® with more than 22,000 consented arthritis patients who track their disease while volunteering to participate in longitudinal and observational research. CreakyJoints also publishes the popular “Raising the Voice of Patients” series, which are downloadable patient-centered educational and navigational tools for managing chronic illness. GHLF recently acquired PainSpot, a digital risk assessment tool for musculoskeletal conditions and injuries. For more information and to become a member (for free), visit www.CreakyJoints.org. To participate in our patient-centered research program, visit www.ArthritisPower.org and to evaluate symptoms for a risk assessment, visit www.PainSpot.org.