Virtual Patient Engagement During Worldwide Pandemic Produces Data Highlighting the Impact of COVID-19 on People Living with Rheumatic Disease


Virtual Patient Engagement During Worldwide Pandemic Produces Data Highlighting the Impact of COVID-19 on People Living with Rheumatic Disease






Jessica Daitch

Phone: 917-816-6712

Email: [email protected]


CreakyJoints® Research from the ArthritisPower® Research Registry Presented at the ACR Convergence 2020

UPPER NYACK, NY (November 2, 2020) – This week CreakyJoints®, the digital patient community for people with all forms of arthritis and part of the Global Healthy Living Foundation (GHLF), is presenting data collected during the worldwide COVID-19 pandemic that spotlights its impact on people living with chronic rheumatic diseases, reporting in part that many patients stopped their immunosuppressive medications without a recommendation from their doctor. The availability and integration of digital research tools, such as the ArthritisPower® Research Registry, combined with access to complementary physician and patient networks, resulted in CreakyJoints presenting more data at the American College of Rheumatology’s (ACR) annual meeting, ACR Convergence 2020, than at previous annual meetings, with two oral presentations and eight additional poster presentations.

In April 2020, CreakyJoints launched the Autoimmune COVID-19 Project, a longitudinal study for patients with arthritis, multiple sclerosis (MS), Crohn’s and colitis, and vasculitis to track the evolving impact of COVID-19 on patients living with these conditions. Data from the English and Spanish-language study informs some of the data being presented at the ACR Convergence 2020.

In the ArthritisPower study (n=1,517), Concerns and Behaviors of Patients with Common Autoimmune Rheumatic Diseases in the United States Early in the COVID-19 Pandemic, and a study using the identical survey (n=9,004) but conducted in partnership with the AARA multi-state rheumatology provider network, Concerns and Health-Related Behaviors During the COVID-19 Pandemic in Patients with or without Autoimmune Rheumatic Disease in a Large Physician Network, data shows that 10-15 percent of people living with autoimmune rheumatic disease interrupted their medication because of concerns directly related to the pandemic. In the ArthritisPower study, 14.9 percent stopped one of their medications, particularly those receiving biologics and with greater COVID-19 concerns. As reported by patients, most medication interruptions (78.7%) were not recommended by their physician.

“Rheumatologists and people living with autoimmune conditions have understandably been concerned about how autoimmune disease and immunosuppressive medications might affect susceptibility to COVID-19,” said lead study author Michael George, MD, MCSE, Assistant Professor of Medicine and Assistant Professor of Epidemiology in Biostatistics and Epidemiology at the Hospital of the University of Pennsylvania. “Our studies show that many patients living with autoimmune disease reacted to threat of COVID-19 by stopping one of their medications. At the same time, routine healthcare visits were interrupted for many patients making it harder for patients and providers to communicate. While guidelines from the American College of Rheumatology have emerged recommending that medications not be interrupted if patients are well, many patients may not be aware of these recommendations.”

Geography Impacted Healthcare Support

Another analysis of data from the AARA network, reported in Impact of COVID-19 on Missed/Cancelled Rheumatology Office Visits and Parenteral Immunosuppressive Medication, found that people with rheumatic disease frequently avoided office visits and laboratory testing, and experienced a reduced volume of immunomodulatory treatments.

Before the pandemic, 100 percent of return visits to healthcare providers were in-person. After March 15, return patient visits (mean 10,678/week) dropped to 70 percent, but were supplemented telemedicine visits (29.7%). However, even as telemedicine visits increased and office visit volume declined, the frequency of missed/cancelled in-person appointments also increased. For example, from March 23-28, 15 percent of all appointments were missed/cancelled overall, 17.9 percent for in-person visits vs. 5.1 percent for infusions (p< 0.0001). Patients with lower socioeconomic status (SES) had a 5-20 percent higher likelihood to miss/cancel office visits compared to those in the highest SES quintile.  Other factors associated with missing/cancelled office visits included greater driving distance to the rheumatologist office, female sex, smoking, comorbidities (e.g. anxiety, asthma, back pain, diabetes, fibromyalgia, GERD, sleep disorder) and region.

Dr. George added, “You might think that rural communities would have greater use of telehealth simply because practices are spread out geographically, but our study showed that people living in urban centers had greater concerns about COVID-19 given the population density and were more likely to make the switch the telehealth. Rheumatology practices in urban centers seem to have adapted to the pandemic fairly rapidly to maintain access to care.”

Digital Tools Increase Patient Adherence

In an oral presentation, CreakyJoints will summarize analysis of participant engagement and adherence from the Digital Tracking of Arthritis Longitudinally (DIGITAL) study, an ancillary study of the ArthritisPower® registry. The team characterized participating patients’ engagement, protocol adherence, and data completeness in an ongoing study in rheumatoid arthritis (RA). For at least 10 days of the 2-week Lead-In period, patients were required to electronically complete two daily single-item Pain and Fatigue numeric rating scales and also longer weekly sets of electronic patient-reported outcomes (ePROs). Those participants who successfully completed the Lead-In were mailed a smartwatch (Fitbit® Versa™) and study materials to then participate in the Main Study, which included automated and manual prompts to complete daily and weekly ePROs, wear the smartwatch and regularly sync it for the next 3 months. Researchers report in, Participant Engagement and Adherence in an ArthritisPower Real-World Study to Capture Smartwatch and Patient-Reported Outcome Data Among Rheumatoid Arthritis Patients, that a short lead-in period appears useful to identify patients most likely to engage in a longitudinal digital health study collecting data on a mobile app and was associated with subsequent patient adherence, and this adherence may vary by data collection platform.

“Given the availability of smart phones, smart watches and other digital devices, it’s important to understand patients’ willingness to engage in research with these devices as well as to confirm the completeness of the data,” said W. Benjamin Nowell, PhD, study author, Director of Patient-Centered Research at CreakyJoints, and principal investigator of ArthritisPower. “This study demonstrates that real-world studies involving passive data collection in RA are feasible and that they benefit from patient-centered implementation and design to minimize patient burden, promote longitudinal engagement and maximize adherence.”

This study is sponsored by Eli Lilly and Company.

·         Effects of the COVID-19 Pandemic on Patients Living with Vasculitis, Abstract 1416 (poster)

·         Treatment Decision Making Among Axial Spondyloarthritis Patients: Real-World Data from the ArthritisPower Registry, Abstract 0154 (poster)

·         Changes in Patient-Reported Outcome (PRO) Scores for Nausea and Fatigue Following Weekly Methotrexate Dose in a Real-World Sample of RA and PsA Patients in the ArthritisPower Registry, Abstract 0155 (poster)

·         Patient Perceptions of Fibromyalgia Symptoms and the Overlap with Axial Spondyloarthritis, Abstract 1316 (poster)

·         Stepping Up for Inflammatory Arthritis (SUFIA): A Pilot Trial to Test Behavioral Economics Strategy to Increase physical Activity in Inflammatory Arthritis, Abstract 0546 (poster)

·         Implementation of Web-Based Patient-Reported Outcome Measures (PROMs) in SLE Clinical Care: A Multi-Center Prospective Cohort Study, Abstract 1145 (poster)

Created by CreakyJoints®, ArthritisPower is the first-ever patient-centered research registry for joint, boneinflammatory skin conditions, and arthritis and rheumatological manifestations of gastrointestinal-tract (GI) conditions. With more than 29,000 consented arthritis patients, 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. Results from ArthritisPower studies are frequently published in peer-reviewed journals and presented at medical meetings in the United States and around the world. ArthritisPower Patient Governors serve as gatekeepers for researchers who seek to access registry data or solicit the community to participate in unique, voluntary studies. ArthritisPower’s past participation in PCORnet®, the National Patient-Centered Clinical Research Network, was supported through multiyear, multimillion-dollar Patient-Centered Outcomes Research Institute funding awards [PPRN-1306-04811]. To learn more and join ArthritisPower, visit

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 in English and Spanish through our popular social media channels, our websites, 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 29,000 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. It also hosts PainSpot (, a digital risk assessment tool for musculoskeletal conditions and injuries. For more information and to become a member (for free), visit

Media Contact: Jessica Daitch | Phone: 917-816-6712 | Email: [email protected]

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About Global Healthy Living Foundation
The Global Healthy Living Foundation is a 501(c)(3) nonprofit organization whose mission is to improve the quality of life for people with chronic illnesses (such as arthritis, osteoporosis, migraine, psoriasis, inflammatory bowel disease, and cardiovascular disease) by advocating for improved access to health care at the community, state, and federal levels, and amplifying education and awareness e!orts within its social media framework. GHLF is also a staunch advocate for vaccines. The Global Healthy Living Foundation is the parent organization of CreakyJoints®, the digital community for millions of arthritis patients and caregivers worldwide who seek education, support, activism, and patient-centered research through our ArthritisPower® ( Research Registry. In response to the COVID-19 pandemic, GHLF started a Patient Support Program, informed by a patient council made up of people living with a wide range of chronic illnesses, that now serves more than 30,000 people. Via CreakyJoints, GHLF also hosts PainSpot (, a digital risk-assessment tool for musculoskeletal conditions and injuries, and eRheum (, for telehealth and virtual-care support. Visit for more information.

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