Catherine H. Bozio, PhD MPH Epidemiologist Centers for Disease Control and Prevention

ArthritisPower Registry Documents Patient Outcomes During COVID-19 Pandemic Interview with:

Kelly Gavigan, MPH Manager, Research and Data Science CreakyJoints 

Kelly Gavigan

Kelly Gavigan, MPH
Manager, Research and Data Science
CreakyJoints and Global Healthy Living Foundation What is the background for this study?

Response: We understood that COVID-19 is of particular concern for people living with autoimmune and rheumatic disease because they are at increased risk of infection, and this created a heightened sense of isolation due to the strict social distancing protocols that so many patients have followed. As a result, we wanted to better understand if symptoms among the autoimmune and rheumatic disease patients in our ArthritisPower research registry were impacted throughout the COVID-19 pandemic. We analyzed patient reported outcome scores for mental, social, and physical health measures between the months of January 2020 and April 2021. We tested the null hypothesis that there was no change in monthly average assessment scores across the 15-month observation period. What are the main findings? 

Response: Over 2,200 ArthritisPower participants were included in the analysis and we had an average of 4.5 observations per participant. We found that scores for anger and anxiety were 1 standard deviation higher than the overall study period mean, and depression scores were ½ standard deviation worse than the overall study period mean, during the months of May and June 2020. Social isolation scores were also highest in June and emotional support scores worsened in December 2020. However, we found that physical health assessment scores did not meaningfully vary from the overall mean throughout the observation period. What should readers take away from your report?

Response: It was clear from our findings that mental health and social health scores fluctuated significantly throughout the 15 months of the COVID-19 pandemic observed, especially during the first US wave of the pandemic in the spring of 2020. It was surprising that the scores for the physical health assessments did not meaningfully vary throughout the observed period, but it was reassuring to see that the participants’ rheumatic disease wasn’t worsening during this time. The results of this study highlight that mental health concerns and social support of rheumatic disease patients deserve attention by providers and caregivers, especially during a health crisis. What recommendations do you have for future research as a result of this work?

Response: The findings of this research demonstrate the ways in which autoimmune and rheumatic disease patients’ mental and social health has been impacted by the COVID-19 pandemic. While there weren’t meaningful variations in the physical health of the participants during the observed period, future research should study the long-term physical impact of the pandemic’s mental and emotional toll on this population. Is there anything else you would like to add?

Response: This study is based on research collected by the ArthritisPower research registry. ArthritisPower is a free online research registry and patient-centered app that allows people with rheumatic and musculoskeletal diseases to track their symptoms, their medications, and their overall disease activity over time. Data can be shared with rheumatologists ahead of appointments and patients can volunteer to participate in studies. ArthritisPower is part of the Global Healthy Living Foundation, which is the parent organization for the online patient community CreakyJoints. CreakyJoints provides patient-centered education and support for people with arthritis and other rheumatic conditions, helping them make decisions about their treatment and care and providing a community of patients like them. I would encourage rheumatologists to familiarize themselves with what CreakyJoints has to offer and talk to their patients about CreakyJoints and ArthritisPower.


Changes in Patient-Reported Outcome (PRO) Scores During the COVID-19 Pandemic: Data from the ArthritisPower Research Registry

Kelly Gavigan1, Esteban Rivera1, Jeffrey Curtis2, Shilpa Venkatachalam1, Laura Stradford3, David Curtis1 and William Nowell11Global Healthy Living Foundation, Upper Nyack, NY, 2Division of Clinical Immunology and Rheumatology, Department of Medicine, Department of Epidemiology, University of Alabama at Birmingham, Birmingham, AL, 3Global Healthy Living Foundation, Nyack, NY

Meeting: ACR Convergence 2021
Tuesday, November 9, 2021



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Last Updated on November 10, 2021 by Marie Benz MD FAAD