RESUMEN
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. RESULTS: Of 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). CONCLUSIONS: Most 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.
RESUMEN
AIM: To assess the impact of the COVID-19 pandemic on patients with rheumatic and musculoskeletal diseases (RMDs). METHODS: REUMAVID is a cross-sectional study using an online survey developed by an international multidisciplinary patient-led collaboration across seven European countries targeting unselected patients with RMDs. Healthcare access, daily activities, disease activity and function, well-being (WHO Five Well-Being Index (WHO-5)), health status, anxiety/depression (Hospital Anxiety and Depression Scale (HADS)) and access to information were evaluated. Data were collected in April-July 2020 (first phase). RESULTS: Data from the first phase included 1800 patients with 15 different RMDs (37.2% axial spondyloarthritis, 29.2% rheumatoid arthritis, 17.2% osteoarthritis and others). Mean age was 53, 80% female and 49% had undertaken university studies. During the beginning of the pandemic, 58.4% had their rheumatology appointment cancelled and 45.6% reported not having received any information relating to the possible impact of SARS-CoV-2 infection in their RMDs, with the main source being patient organisations (27.6%).Regarding habits, 24.6% increased smoking, 18.2% raised their alcohol consumption, and 45.6% were unable to continue exercising. Self-reported disease activity was high (5.3±2.7) and 75.6% reported elevated pain. Half the patients (49.0%) reported poor well-being (WHO-5) and 46.6% that their health had changed for the worse during lockdown. According to HADS, 57.3% were at risk of anxiety and 45.9% of depression. CONCLUSION: Throughout the first wave of the COVID-19 pandemic, patients with RMDs have experienced disruption in access to healthcare services, poor lifestyle habits and negative effects on their overall health, well-being and mental health. Furthermore, information on COVID-19 has not reached patients appropriately.