Anxiety and Medication Interruptions During COVID-19 Linked to Increased Disease Flares, According to New Data from the ArthritisPower Research Registry

New ArthritisPower data presented by CreakyJoints®, the digital, international patient community for people with all forms of arthritis and part of the Global Healthy Living Foundation, shows that people living with rheumatic diseases during the ongoing COVID-19 pandemic experienced high levels of anxiety and depression, which were linked to medication interruptions and associated flares. Three posters describing how the global pandemic affected mental health alongside eight other posters and two oral presentations are being presented at this week's virtual American College of Rheumatology Convergence 2021 (November 3-9, 2021).

The poster titled, "Changes in Patient-Reported Outcome Scores During the COVID-19 Pandemic: Data from the ArthritisPower Research Registry," evaluated whether mean PROMIS patient-reported outcome scores for mental, social and physical health among people with rheumatic conditions fluctuated during 15 months of the COVID-19 pandemic. Developed by the NIH, PROMIS® is a publicly available system of highly reliable, standardized, and precise measures of patient-reported health outcomes (PROs) used to measure health symptoms and health-related quality of life domains such as pain, fatigue, depression, and physical function, which are relevant to a variety of chronic diseases. These measures of health are scored 0-100, with US general population mean of 50, and 10 as the standard deviation (SD) of the reference population. The study found that mental health scores varied significantly, particularly during the first US wave of the COVID-19 pandemic, whereas scores for physical health remained relatively stable. In January and February 2020, anger, and anxiety had significantly lower scores compared to the overall assessment mean for the study period.

However, during the months of May and June 2020, mean scores were elevated by a standard deviation for anger (May: 74.2 [14.1], p< 0.001; June: 76.4 [12.1], p< 0.001, overall mean 61.6 [13.0]) and for anxiety (May: 72.0 [11.1], p< 0.001; June: 73.3 [12.3], < 0.001, overall mean 63.1 [10.7]). Depression scores, while at their lowest in January, increased by half of one standard deviation in May (66.6 [13.0], p< 0.001) and June 2020 (67.4 [11.1], p< 0.001, overall mean 61.2 [9.5]). In addition, social isolation was at its worst in June (66.0 [7.1]; overall mean 61.7 [9.9]) and emotional support dipped in December 2020 (36.7 [9.6]; overall mean 41 .4 [9.7]).

The data is corroborated by a qualitative study titled, "Impact of the COVID-19 Pandemic on the Quality of Life of Patients with Rheumatic Conditions: A Qualitative Analysis of Perceived Risk and Decision-Making." Interviewed patients (n=19) with rheumatic disease felt themselves at increased risk for infection, and therefore worked to stay safe from COVID-19 and improve their disease management and mental health. Despite these efforts, participants felt unsupported by all levels of the healthcare system. They self-reported worse autoimmune disease symptoms, and relapse or exacerbation of existing mental health conditions, and in some cases, new symptoms of trauma, depression, and/or anxiety.

"The pandemic brought significant uncertainty and fear to the community of people who are immunocompromised due to their illness(es) or the medications used to treat them," said lead author of the qualitative study Courtney Wells, PhD, MPH, LGSW, assistant professor, University of Wisconsin-River Falls and a member of CreakyJoints who lives with rheumatoid arthritis. "Given our study and others, it's important to consider how we address the mental health of affected patients to ensure we are treating each person holistically."

Similarly, in the poster titled, "Trends in Medication Interruptions and Associations with Disease Flares During a Public Health Crisis: Longitudinal Data from Patients with Autoimmune Rheumatic Disease During the COVID-19 Pandemic," authors found that anxiety among patients peaked at the start of the pandemic (April 2020 PROMIS-Anxiety T score 59.0), but declined by February 2021 ((PROMIS-Anxiety T score 55.6 (p<0.001 for trend). Medication interruptions were more common in those with higher anxiety (p < 0.001, n=1,419), which was also associated with an increased risk of severe disease flares (severity ?6/10) [OR 1.76 (95% CI 1.24-2.48)].

Mental Models Don't Match

Despite treat-to-target (TTT) being the "gold-standard" for the management of rheumatoid arthritis, the study titled, "Rheumatologists' and Patients' Mental Models for Treatment of RA Explain Low Rates of Treat-to-Target," describes the disconnect between how physicians and patients value the criteria used to make decisions about treatment goals. The qualitative study interviews 14 rheumatologists and 30 people living with RA. Both physicians and patients valued PROs (86% physicians; 97% patients), disease activity relative to the set target (86% physicians; 83% patients), and the need for education before making treatment decisions (100% for both). However, physicians expressed that they are more focused on the overall trajectory of the disease, adherence and response to DMARDs, versus patients who are less focused on disease activity measurements using validated instruments and have more uncertainty related to how they might feel on a new medication, particularly related to unwanted side effects.

"Shared-decision making should drive TTT conversations in the clinic, however, this study demonstrates that physicians and patients may not be communicating effectively given their differing priorities," said Betty Hsiao, MD, Assistant Professor; Associate Program Director, Rheumatology, Yale School of Medicine. "Future research should explore how we can improve communication platforms between physicians and patients."

"At CreakyJoints, our research is focused on better understanding the patient experience of rheumatologic conditions and exploring how physicians and patients can be more collaborative in managing disease over time," said W. Benjamin Nowell, PhD., Director of Patient-Centered Research, CreakyJoints. "We're honored to contribute to this important research that conveys patients' experiences living with chronic disease during the pandemic, and beyond, at this year's ACR Convergence. Our findings highlight the need to implement PRO measures for remote patient monitoring in order to more fully understand how patients are doing outside of clinical visits."

Studies Presented by CreakyJoints at the 2021 ACR Convergence

Scientific Program:

• Changes in Patient-Reported Outcome Scores During the COVID-19 Pandemic: Data from the ArthritisPower Research Registry (POSTER, Tue. 11/9, 8:30-10:30 a.m. ET)
• Impact of the COVID-19 Pandemic on the Quality of Life of Patients with Rheumatic Conditions: A Qualitative Analysis of Perceived Risk and Decision Making (POSTER, Tue. 11/9, 8:30-10:30 a.m. ET)
• Trends in Medication Interruptions and Associations with Disease Flares During a Public Health Crisis: Longitudinal Data from Patients With Autoimmune Rheumatic Diseases During the COVID-19 Pandemic (POSTER, Tue. 11/9, 8:30-10:30 a.m. ET)
• Perceptions about COVID-19 Vaccination Among Patients with Rheumatic Diseases Enrolled in a National Patient Registry (POSTER, Tue. 11/9, 8:30-10:30 a.m. ET)
• Changes in Telemedicine for Rheumatologic Care during the COVID-19 Pandemic: Patient Perceptions and Preferences (POSTER, Tue. 11/9, 8:30-10:30 a.m. ET)
• Impact of Treatment Experience on Patient Preferences and Disease Burden in Psoriatic Arthritis: Results From a Rheumatology Patient Research Registry (POSTER, Mon. 11/8, 8:30-10:30 a.m. ET)
• Rheumatologists' and Patients' Mental Models for Treatment of RA Explain Low Rates of Treat-to-Target (POSTER, Sun. 11/7, 8:30-10:30 a.m. ET)
• Understanding Heterogeneity in Patients' Conceptualization of Treatment for Rheumatoid Arthritis: A Cluster Analysis (POSTER, Sun. 11/7, 8:30-10:30 a.m. ET)
• Racial and Ethnic Distribution of Rheumatic Diseases in Health Systems of the National Patient-Centered Clinical Research Network (POSTER, Mon. 11/8, 8:30-10:30 a.m. ET)

Patient Perspectives Program:

• Should I Get the COVID-19 Vaccine With My RA? Using Evidence-Based Resources for Decision-Making (POSTER, Sun. 11/7, 8:30-10:30 AM T )
• Fighting for the Care We Deserve: My Experience as a Latina Patient-Researcher During the COVID-19 Pandemic (ORAL PRESENTATION, Sun. 11/7, 4:00-4:15 PM ET)
• How Online Spanish-Language Resources Got Me and My RA Through the COVID-19 Pandemic (POSTER, Sun. 11/7, 8:30-10:30 AM ET)
• CreakyKitchen: How the Online Cooking Show I Started is Building Community and Encouraging Better Food Choices for Me and Others Living with Rheumatic and Chronic Disease (ORAL PRESENTATION, Sun. 11/7, 4:15-4:30 PM ET)

About ArthritisPower

Created by CreakyJoints®, ArthritisPower® is the first-ever patient-centered research registry for joint, bone, and inflammatory skin conditions, as well as arthritis and rheumatological manifestations of gastrointestinal-tract (GI) conditions. With tens of thousands of consented arthritis patients, the free ArthritisPower mobile and desktop application allows patients to track their disease and participate 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. To learn more and join ArthritisPower, visit ArthritisPower.org.

About CreakyJoints

CreakyJoints® is a digital, international 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 1,600 trained volunteer patient, caregiver, and health care activists.

Part of the Global Healthy Living Foundation, CreakyJoints also has a patient-reported outcomes registry called ArthritisPower® (ArthritisPower.org), which includes tens of thousands of consented arthritis patients who track their disease while volunteering to participate in longitudinal and observational research. CreakyJoints publishes the popular "Raising the Voice of Patients" series, which offers 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, and eRheum (eRheum.org), for telehealth and virtual-care support. All programming is free, always. For more information and to become a member, visit CreakyJoints.org.

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