Accessing care during the pandemic: A UK wide survey of people with rheumatoid arthritis and adult juvenile inflammatory arthritis during the COVID‐19 pandemic

Abstract

COVID‐19 drastically changed healthcare delivery models for rheumatology services. We sought to understand the impact of these changes for patients with Rheumatoid Arthritis (RA) and adult Juvenile Inflammatory Arthritis (AJIA) in established patients and those newly diagnosed during the pandemic.ResultsOf the 316 participants, a significant proportion regularly used analgesics (45.4%, n = 119), corticosteroids (17.9%, n = 47) and Non‐Steroidal Anti‐Inflammatory Drugs [(NSAIDs) (36.6%, n = 96)]. Two thirds of participants (66.5%, n = 210) did not know their Disease Activity Score‐28 (DAS28). Of the remaining third, moderate disease activity (12%, n = 38) was most reported. We found that 16.8% (n = 53) felt their condition was managed well during the pandemic. The remainder felt more negatively. For the newly diagnosed cohort, 34.5% (n = 10) delayed seeking GP help because of COVID‐19 concerns. Once assessed, a quarter (24.1%, n = 7) were referred to rheumatology after 4 or more consultations. We found 47% (n = 77) expressed positive opinions on remote consultations, whereas 36% (n = 59) had concerns. The lack of clinical examination (42.5%, n = 25) was flagged. Changing the dynamic from health worker to a patient centred approach was the most wished for improvement (20.3%, n = 64).ConclusionsMost participants did not know their disease activity status, which is of concern. With a push towards patient‐centred and patient‐led care, education and supported self‐management is critically important. There is high use of NSAIDs and corticosteroids. Pathways of care underwent change with subsequent delays in specialist assessment. The introduction of patient‐initiated follow‐up (PIFU) and virtual consultations further distances healthcare professionals from patients and could affect outcomes.