@article{3003212,
    title = "Quality indicators for systemic lupus erythematosus based on the 2019 EULAR recommendations: Development and initial validation in a cohort of 220 patients",
    author = "Chavatza, K. and Kostopoulou, M. and Nikolopoulos, D. and Gioti, O. and Togia, K. and Andreoli, L. and Aringer, M. and Boletis, J. and Doria, A. and Houssiau, F.A. and Jayne, D. and Mosca, M. and Svenungsson, E. and Tincani, A. and Bertsias, G. and Fanouriakis, A. and Boumpas, D.T.",
    journal = "Annals of the Rheumatic Diseases",
    year = "2021",
    volume = "80",
    number = "9",
    pages = "1175-1182",
    publisher = "BMJ Publishing Group",
    issn = "0003-4967, 1468-2060",
    doi = "10.1136/annrheumdis-2021-220438",
    keywords = "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",
    abstract = "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."
}