Background 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.
Methods 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).
Results 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).
Conclusion 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.
- lupus erythematosus
- autoimmune diseases
- quality indicators
- health care
Data availability statement
All data relevant to the study are included in the article or uploaded as online supplemental information.
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GB, AF and DTB are joint senior authors.
Handling editor Josef S Smolen
KC, MK, GB, AF and DTB contributed equally.
Contributors KC and OG collected data from patient medical charts and KC drafted the manuscript. MK performed statistical analyses and edited the manuscript. DN edited the manuscript. KT assessed patient medical charts for eligibility in the study. LA, MA, JB, AD, FAH, DJ, MM, ES and AT evaluated the quality indicators, provided voting and critically reviewed the manuscript. GB and AF supervised the study and edited the manuscript. DTB conceived and supervised the study and edited the manuscript.
Funding DTB was supported by the European Research Council (ERC) under the European Union’s Horizon 2020 research and innovation programme (grant agreement no. 742390). DJ was supported by the NIHR Cambridge Biomedical Research Centre (BRC-1215 20014).
Competing interests DTB is an Editorial Board member in the Annals of the Rheumatic Diseases. The remaining authors declare no competing interests relevant to this work.
Provenance and peer review Not commissioned; externally peer reviewed.
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