Kelly Gavigan, MPH Director, Data Management and Analytics Global Healthy Living Foundation

Patients with Rheumatic Diseases Report Fluctuating Mental Health During COVID-19 Pandemic Interview with:

Kelly Gavigan, MPH Director, Data Management and Analytics Global Healthy Living Foundation

Kelly Gavigan

Kelly Gavigan, MPH
Director, Data Management and Analytics
Global Healthy Living Foundation  What is the background for this study? 

Response: COVID-19 is of particular concern for people living with autoimmune and rheumatic disease, not only because they have an increased risk of infection but also because of the heightened sense of isolation due to strict social distancing protocols that many patients continue to follow through today. 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 previously conducted and reported on an analysis of patient reported outcome data from the ArthritisPower registry between the months of January 2020 to April 2021 at the American College of Rheumatology Convergence in 2021. We conducted a follow-up analysis between May and December 2021, which is our area of focus in this particular abstract.  What are the main findings?

Response: We tested the null hypothesis that there was no change in monthly average assessment scores across the 23-month observation period. Over 2,200 participants were included in the analysis, contributing a total of about 50,000 PRO scores, of which about 8,400 were contributed between May and December 2021. We found that participants’ mental and social health assessment scores improved and worsened over the last 8 months of 2021 in a manner that corresponded with major events during the COVID-19 pandemic.

  • After vaccines became widely available throughout the US, scores for anger and social isolation declined. However, social isolation scores worsened by one half of a standard deviation compared to the overall study period mean in July, when the Delta variant emerged in the US.
  • From July to August, Social Isolation scores decreased by 1 standard deviation. Compared to the overall assessment mean, Anger declined by one half of a standard deviation in August and Anxiety declined by one half of a standard deviation in September. These decreases in scores demonstrate improved mental and social health outcomes during the later summer months, possibly corresponding with the availability of a third vaccine dose for people with compromised immunity.
  • Scores continued to fluctuate into the fall of 2021, but by December the mental and social health scores worsened, with Anger increasing by greater than one half of a standard deviation compared to the overall assessment mean. Scores for Pain Interference, Fatigue, and Sleep Disturbance significantly improved in May, June, July and August compared to the assessment mean, though none changed by greater than one half of a standard deviation. What should readers take away from your report?

Response: More than two years into the COVID-19 pandemic, it is not surprising that people’s mental and emotional health continue to be impacted by new virus variants and increases in COVID-19 prevalence in the population. While it was encouraging to see that participants’ rheumatic disease wasn’t worsening during this time, the results of this study highlight that mental health concerns and social support for rheumatic disease patients deserve attention by providers and caregivers to ensure comprehensive care. This is especially the case now that mask mandates and social distancing requirements have been lifted throughout the US, but people with autoimmune and rheumatic diseases continue to restrict or modify their interactions with others for their own protection. 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 have 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 an 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. They can also volunteer to participate in research studies, like this one. ArthritisPower is part of the Global Healthy Living Foundation, which is the parent organization for the international, digital 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. 



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Last Updated on June 7, 2022 by Marie Benz MD FAAD