COVID-19-related anxiety trajectories in children, young people and adults with rheumatic diseases

Objectives Uncertainty regarding the risk of coronavirus disease 2019 (COVID-19), its complications and the safety of immunosuppressive therapies may drive anxiety among adults and parents of children and young people (CYP) with rheumatic diseases. This study explored trajectories of COVID-related anxiety in adults and parents of CYP with rheumatic diseases. Methods Adults and parents of CYP participating in the international COVID-19 European Patient Registry were included in the current study if they had enrolled in the 4 weeks following 24 March 2020. COVID-related anxiety scores (0-10) were collected weekly for up to 28 weeks. Group-based trajectory models explored COVID-related anxiety clusters in adult and parent populations, with optimal models chosen based on model fit, parsimony and clinical plausibility. Demographic, clinical and COVID-19 mitigation behaviours were compared between identified clusters using univariable statistics. Results In 498 parents of CYP and 2640 adults, four common trajectory groups of COVID-related anxiety were identified in each cohort: persistent extreme anxiety (32% and 17%), persistent high anxiety (43% and 41%), improving high anxiety (25% and 32%) and improving moderate anxiety (11% and 10%), respectively. Few characteristics distinguished the clusters in the parent cohort. Higher and more persistent anxiety clusters in the adult cohort were associated with higher levels of respiratory comorbidities, use of immunosuppressive therapies, older age and greater self-isolation. Conclusions COVID-19-related anxiety in the rheumatic disease community was high and persistent during the COVID-19 pandemic, with four common patterns identified. In the adult cohort, higher COVID-related anxiety was related to perceived risk factors for COVID-19 morbidity and mortality. Lay Summary What does this mean for patients? Anxiety regarding coronavirus disease 2019 (COVID-19) has had a profound impact on the mental health of many people. For those with rheumatic diseases and their families, the impact of COVID-19 on their condition, as well as the unknown impact of contracting COVID-19 while on anti-rheumatic drug treatments, may cause increased anxiety. This study explored patterns of anxiety in 2640 adults and 498 families of children with rheumatic diseases from >40 countries. Participants took part in the online COVID-19 European Patient Registry from March 2020 and rated their own anxiety every week for 6 months. There were four different patterns of anxiety: extremely high anxiety that did not improve, high anxiety that did not improve, high anxiety that improved over time and some anxiety that improved over time. People with higher anxiety were older, had more medical conditions affecting their breathing, used more anti-rheumatic drugs and self-isolated early during the pandemic. It remains important to reassure people with rheumatic diseases and their families about the safety of anti-rheumatic drugs in the COVID-19 era.