ABSTRACT
Background/AimsYounger and older people with rheumatic diseases may experienceincreased anxiety during the COVID-19 pandemic, due to theuncertainty regarding their likelihood of contracting the virus, itscomplications alongside their existing condition and whether theirimmunosuppressive treatments pose additional risks. This studyexplored trajectories of anxiety in parents of children and youngpeople (CYP) with rheumatic diseases and adults with rheumaticdiseases in the six months following March 2020 during the COVID-19pandemic.MethodsCYP and adults recruited to the international COVID-19 EuropeanPatient Registry, a parent-led, online, self-referred prospective cohortrecruiting participants globally, were selected if enrolled within 20thMarch to 17th April 2020. Anxiety scores (0-10, 10=Highest anxiety)were collected weekly for up to 28 weeks and denoted parent anxietyin the CYP cohort and self-reported anxiety in the adult cohort.Group-based trajectory models explored anxiety clusters usingcensored-normal models in the CYP and adult populations, separately.Linear, quadratic and cubic polynomials were tested within 1 to 10clusters and optimal models selected based on a combination ofmodel fit (BIC), parsimony and clinical plausibility. Demographic(country, age, gender) and clinical (diagnosis, disease control, respiratory comorbidity, immunosuppressive therapy) informationand COVID-19 mitigation behaviours (isolation, distancing, none)were collected at initial enrolment and compared between clustersusing Chi-squared, Fisher's exact and Kruskal-Wallis tests.ResultsAmong 498 CYP and 2640 adults, most were female (65%, 89%) andfrom the UK (50%, 84%), respectively. The most common diagnoseswere polyarticular JIA (37%) and oligoarticular JIA (29%) among CYPand RA among the adults (63%). Respiratory comorbidities wereuncommon in the CYP (10%) and adult (17%) cohorts, and most weretaking any immunosuppressive therapies (85%, 87%), respectively. Asof March 2020, 88% and 79% were self-isolating, respectively. In boththe parents of CYP and adult cohorts, four trajectory clusters wereidentified with similar patterns: Persistent extremely high anxiety (32%, 17%), persistent high anxiety (43%, 41%), high anxiety that marginallyimproved (25%, 32%) and moderate anxiety that improved (11%, 10%). Among CYP, few characteristics distinguished the clusters.However, in the adult cohort, clusters with greater and more persistentanxiety were associated with higher levels of respiratory comorbidities, higher use of immunosuppressive therapies, higher initial levels of selfisolation and slightly older age than those with lower or improvinganxiety over time.ConclusionThis study reports four trajectories of anxiety during the COVID-19pandemic that are consistent across parents of CYP with rheumaticdiseases and among adults with these conditions. Despite relativelylower risks for CYP, parental anxiety regarding COVID-19 was highand not associated with characteristics of their child or of their child'sdisease. Among adults with rheumatic diseases, greater anxiety wasassociated with risk factors potentially associated with COVID-19morbidity and mortality.