TY - JOUR TI - Quality indicators for systemic lupus erythematosus based on the 2019 EULAR recommendations: Development and initial validation in a cohort of 220 patients AU - Chavatza, K. AU - Kostopoulou, M. AU - Nikolopoulos, D. AU - Gioti, O. AU - Togia, K. AU - Andreoli, L. AU - Aringer, M. AU - Boletis, J. AU - Doria, A. AU - Houssiau, F.A. AU - Jayne, D. AU - Mosca, M. AU - Svenungsson, E. AU - Tincani, A. AU - Bertsias, G. AU - Fanouriakis, A. AU - Boumpas, D.T. JO - Annals of the Rheumatic Diseases PY - 2021 VL - 80 TODO - 9 SP - 1175-1182 PB - BMJ Publishing Group SN - 0003-4967, 1468-2060 TODO - 10.1136/annrheumdis-2021-220438 TODO - hydroxychloroquine; prednisone; acetylsalicylic acid; antirheumatic agent; antithrombocytic agent; dipeptidyl carboxypeptidase inhibitor; glucocorticoid; hydroxychloroquine; immunosuppressive agent; prednisone, adult; adverse outcome; California; cohort analysis; disease activity; disease severity; drug dose titration; Europe; female; health care organization; health care quality; health care system; hospitalization; human; major clinical study; organ injury; patient compliance; remission; Review; risk reduction; systemic lupus erythematosus; kidney; lupus erythematosus nephritis; male; mass screening; medical society; osteoporosis; pathology; practice guideline; preeclampsia; pregnancy; protocol compliance; recurrent disease; reproducibility; risk assessment; systemic lupus erythematosus, Angiotensin-Converting Enzyme Inhibitors; Antirheumatic Agents; Aspirin; Drug Tapering; Europe; Female; Glucocorticoids; Guideline Adherence; Hospitalization; Humans; Hydroxychloroquine; Immunosuppressive Agents; Kidney; Lupus Erythematosus, Systemic; Lupus Nephritis; Male; Mass Screening; Osteoporosis; Platelet Aggregation Inhibitors; Practice Guidelines as Topic; Pre-Eclampsia; Prednisone; Pregnancy; Quality Indicators, Health Care; Remission Induction; Reproducibility of Results; Risk Assessment; Societies, Medical; Symptom Flare Up TODO - Quality of care is receiving increased attention in systemic lupus erythematosus (SLE). We developed quality indicators (QIs) for SLE based on the 2019 update of European League Against Rheumatism recommendations. A total of 44 candidate QIs corresponding to diagnosis, monitoring and treatment, were independently rated for validity and feasibility by 12 experts and analysed by a modified Research and Development Corporation/University of California Los Angeles model. Adherence to the final set of QIs and correlation with disease outcomes (flares, hospitalisations and organ damage) was tested in a cohort of 220 SLE patients with a median monitoring of 2 years (IQR 2–4). The panel selected a total of 18 QIs as valid and feasible. On average, SLE patients received 54% (95% CI 52.3% to 56.2%) of recommended care, with adherence ranging from 44.7% (95% CI 40.8% to 48.6%) for diagnosis-related QIs to 84.3% (95% CI 80.6% to 87.5%) for treatment-related QIs. Sustained remission or low disease activity were achieved in 26.8% (95% CI 21.1% to 33.2%). Tapering of prednisone dose to less than 7.5 mg/day was achieved in 93.6% (95% CI 88.2% to 97.0%) while 73.5% (95% CI 66.6% to 79.6%) received the recommended hydroxychloroquine dose. Higher adherence to monitoring-related QIs was associated with reduced risk for a composite adverse outcome (flare, hospitalisation or damage accrual) during the last year of observation (OR 0.97 per 1% adherence rate, 95% CI 0.96 to 0.99). We developed QIs for assessing and improving the care of SLE patients. Initial real-life data suggest face validity, but a variable degree of adherence and a need for further improvement. © Author(s) (or their employer(s)) 2021. No commercial re-use. See rights and permissions. Published by BMJ. ER -