Today CreakyJoints®, the digital patient community for people with all forms of arthritis and part of the Global Healthy Living Foundation, is presenting data that demonstrate how integrating digital tools into patients’ arthritis management strategies can improve understanding of arthritis. These data were shared during the European E-Congress of Rheumatology 2020, presented virtually by the European League Against Rheumatism (EULAR) starting June 3. The patient-centered research, conducted prior to the COVID-19 outbreak, illuminates paths forward for patients entering or already in their new digital realities.
“Smartphones, wearables, and social media are ubiquitous in our daily lives and we are increasingly comfortable using these tools to help us communicate with each other and access information, including about our own health,” said W. Benjamin Nowell, PhD, study author, Director of Patient-Centered Research at CreakyJoints, and principal investigator of ArthritisPower. “The data we are presenting at European E-Congress of Rheumatology 2020 examines how digital technology can be integrated into arthritis management and how it can be used to conduct arthritis research. We wanted to learn more about the feasibility of patients using a smartphone app and commercial grade fitness tracker to share daily data over an extended period of time, as well as gain insight into which aspects of their condition patients prefer to track digitally. Our findings help inform future clinical trials and disease management strategies, and they come at the right time as we all adjust to our lives in a COVID-19 world.”
In the poster titled, “Which Patient-Reported Outcomes Do Rheumatology Patients Find Important to Track Digitally? A Real-World Longitudinal Study in ArthritisPower,” patients with rheumatic disease used the smartphone app of the ArthritisPower registry to choose patient reported outcomes (PROs) that they felt were important to track for their condition. Participants were asked to make an initial selection at baseline, and then reviewed their selections at the end of months 1, 2, and 3, when they were given the option to either continue tracking the same symptoms or to change to different measures. A total of 140 participants completed all four timepoints of the study. In order of priority, the top 5 symptoms ranked by participants across rheumatic conditions as most important for tracking were fatigue, physical function, pain intensity, pain interference and duration of morning joint stiffness.
“Not only did this study tell us about the symptoms rheumatic disease patients feel are most important to track, we saw good participation across the study period, meaning that respondents felt comfortable using the ArthritisPower app to participate in longitudinal research,” added Dr. Nowell. “This is especially important as these and other instruments will be pivotal for successful telehealth integration into patients’ and healthcare providers’ lives.”
Smart Devices Aid in Data Collection
The Digital Tracking of Arthritis Longitudinally (DIGITAL) study is evaluating the use of electronically captured patient-reported outcomes (ePRO) and passive data collection from a Fitbit device to identify disease worsening in a real-world study of participants with rheumatoid arthritis. In the poster titled, “Participant engagement in an ArthritisPower real-world study to capture smartwatch and patient-reported outcome data among rheumatoid arthritis patients,” researchers assessed participants’ adherence (30 days, n=170) to required daily digital tasks, such as wearing and syncing a smartwatch, and answering questions on a smartphone app. Of the digital tasks in the main study, participants were most adherent at wearing and syncing the smartwatch, with 93% wearing it at least 80% of the time. Participants were least adherent at completing daily PRO assessments with 70% of participants providing them more than 70% of the time. Overall, 67% of participants achieved composite compliance, meaning that they provided more than 70% of the data across all data types.
Another poster stemming from the DIGITAL study, “Using self-reported outcomes to detect new-onset flare in a real-world study of participants with rheumatoid arthritis – Interim results from the Digital Tracking of Arthritis Longitudinally (DIGITAL) study,” evaluated whether patient-reported new-onset flares could be detected using a classification model applied to data collected from participants with rheumatoid arthritis in a digital real-world study. The training data included 58 new-onset flares in 50 unique participants to build a logistic regression model that was applied to test data that included 64 flare outcomes in 52 unique participants. The best fit model that was able to correctly classify new-onset flare 78% of the time included the single-item patient-reported difficulty in participating in work, family life and social events from the OMERACT RA FLARE instrument and scores from the daily pain numeric rating scale. The DIGITAL study and top PROs study were supported by Eli Lilly and Company.
“What we hope to learn from the DIGITAL study and subsequent confirmatory studies is that passive activity data could be used as an objective measure of pain,” stated Jeffrey R. Curtis, MD, MS, MPH, Harbert – Ball Professor of Medicine, Division of Clinical Immunology and Rheumatology, and Director, UAB Arthritis Clinical Intervention Program (ACIP) at University of Alabama at Birmingham. “Beyond research, similar approaches could be used for patient monitoring in clinical care if we can demonstrate that certain passive measures from wearables are connected to changes in disease activity.”
CreakyJoints is presenting seven studies at the European E-Congress of Rheumatology 2020, including:
- Which Patient-Reported Outcomes Do Rheumatology Patients Find Important to Track Digitally? A Real-World Longitudinal Study in ArthritisPower. Poster. PARE0026
- Participant engagement in an ArthritisPower real-world study to capture smartwatch and patient-reported outcome data among rheumatoid arthritis patients. Poster. THU0564
- Using self-reported outcomes to detect new-onset flare in a real-world study of participants with rheumatoid arthritis – Interim results from the Digital Tracking of Arthritis Longitudinally (DIGITAL) study. Poster. FRI0018
- 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. Poster. Presentation number: SAT0150
- Patient Perceptions of Fibromyalgia Symptoms and the Overlap with Axial Spondyloarthritis. Abstract. AB0710
- Stepping up for Inflammatory Arthritis: A pilot trial to test behavioral economics strategy to increase physical activity in Inflammatory Arthritis. Abstract. AB0354
- #ArthritisAtWork: Using Twitter to Engage The International Arthritis Community. Abstract. OP0196-PARE
“As a digital organization, it’s exciting that CreakyJoints is presenting innovatively designed studies that speak to how our patients interact with other digital tools, such as wearables, smartphone apps, and social media,” said Louis Tharp, co-founder and executive director of CreakyJoints and the Global Healthy Living Foundation. “We applaud EULAR for inviting researchers and arthritis patients to take part in this year’s meeting at no cost to patients. This completely virtual congress will allow greater dissemination of key findings and ensure that our members feel central to the research agenda.”
Created by CreakyJoints®, ArthritisPower is the first-ever patient-centered research registry for joint, bone, and inflammatory skin conditions. With nearly 30,000 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 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 1,700 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® (ArthritisPower.org) with nearly 30,000 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 (PainSpot.org), a digital risk assessment tool for musculoskeletal conditions and injuries. For more information and to become a member (for free), visit www.CreakyJoints.org.