CreakyJoints Poster to be Presented at the Annual European Congress of Rheumatology (EULAR 2019)

UPPER NYACK, NY (June 12, 2019) – On June 13, CreakyJoints®, a Global Healthy Living Foundation patient community, will present a poster at the Annual European Congress of Rheumatology (EULAR 2019) meeting in Madrid, Spain. Two additional abstracts were accepted for publication.

The poster titled, “Patients’ Perceptions and Use of Medical Marijuana,” found that more than half (57.3%) of arthritis patients (N=1,059) have reported trying marijuana (THC) and/or cannabidiol (CBD) products for a purpose they perceived as medical. Of those who use THC regularly for medical reasons 62 percent reportedly use THC at least once daily. Among the most commonly cited reasons for stopping use were illegality (31.2%) of THC and cost (32.5%) of CBD. Despite those barriers, most participants who tried THC or CBD said that it improved their symptoms (THC= 97.1%, CBD=93.7%) and/or their condition (THC= 96.1%, CBD=93.1%). Pain and sleep disturbance were the main symptoms participants sought to relieve with these products and many used them in lieu of prescribed or over-the-counter medications.

“Despite best efforts by rheumatologists and patients to find an effective arthritis treatment and management strategy, there are still many patients who seek additional relief for chronic symptoms,” stated W. Benjamin Nowell, Ph.D., Director of Patient-Centered Research at CreakyJoints and an ArthritisPower co-principal investigator and poster author. “It’s alarming that so many arthritis patients use medical marijuana and cannabidiol products in the absence of high quality evidence about their safety, effectiveness, and appropriate dosing. This underscores the urgent need to conduct randomized controlled trials to study their effectiveness at addressing symptoms common to arthritis as well as their potential to interact with other medications. Moreover, it’s concerning that patients may not be discussing their use of these products to augment or replace other arthritis treatments with their health care team.”

The survey found that only two-thirds (64.6%) of participants reported telling their HCP about their THC or CBD use and of those more than half did not receive any information from their healthcare provider about safety, effectivenes or dosing, possibly because such little research is available. Of those that did receive advice, most reported that their HCP did not consider their use of THC or CBD when making other treatment changes. Whether they had used THC or CBD for medical reasons or not, most patients (THC=65.5%, CBD=55.6%) expressed wanting more information about them, including on their effectiveness and interaction with other medications from their health care provider or online educational resources.

Utilizing the ArthritisPower™ research registry, which now includes more than 19,000 consented participants, the 77-item survey included 1,059 participants who were > 19 years old, lived in the United States, and reported physician-diagnosed rheumatoid or musculoskeletal disease. The survey also required participants to report their current health status (NIH PROMIS Global Health), use and perceptions of THC/CBD, and related information needs. The complete survey results are available in the poster, upon request.

Overview of CreakyJoints Data at EULAR 2019

·         Patients’ Perceptions and Use of Medical Marijuana

Identifier: THU0644

Poster presentation: June 13, 2019 at 11:45 a.m. CET

·         The Patient Experience: A Process Evaluation of a Pilot Pragmatic Using Remote Monitoring of Symptoms

Identifier: AB1284, published abstract

·         Patient Preferences for the Use of Digital Tools and Social Media in Diet and Exercise Interventions

Identifier: AB1222, published abstract

About ArthritisPower®

Created by CreakyJoints® and supported by a multiyear, multimillion dollar investment by the Patient-Centered Outcomes Research Institute (PCORI), ArthritisPower® 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 19,000 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 navigational tools for managing chronic illness. For more information and to become a member (for free), visit www.CreakyJoints.org.

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