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Quality indicators for systemic lupus erythematosus based on the 2019 EULAR recommendations: development and initial validation in a cohort of 220 patients
  1. Katerina Chavatza1,
  2. Myrto Kostopoulou2,
  3. Dionysis Nikolopoulos1,
  4. Ourania Gioti3,
  5. Konstantina Togia1,
  6. Laura Andreoli4,5,
  7. Martin Aringer6,
  8. John Boletis7,
  9. Andrea Doria8,
  10. Frederic A Houssiau9,
  11. David Jayne10,
  12. Marta Mosca11,
  13. Elisabet Svenungsson12,
  14. Angela Tincani4,
  15. George Bertsias13,
  16. Antonis Fanouriakis1,3,
  17. Dimitrios T Boumpas1,14
  1. 1Rheumatology and Clinical Immunology, Medical School, National and Kapodistrian University of Athens, "Attikon" University Hospital of Athens, Athens, Greece
  2. 2Department of Nephrology, “G. Gennimatas” General Hospital, Athens, Greece
  3. 3Department of Rheumatology, "Asklepieion" General Hospital, Voula, Athens, Greece
  4. 4Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy
  5. 5Unit of Rheumatology and Clinical Immunology, Spedali Civili, Brescia, Italy
  6. 6Division of Rheumatology, Department of Medicine III, University Medical Center & Faculty of Medicine Carl Gustav Carus at the TU Dresden, Dresden, Germany
  7. 7Nephrology Department and Renal Transplantation Unit, “Laikon” Hospital, National and Kapodistrian University of Athens, Medical School, Athens, Greece
  8. 8Rheumatology Unit, Department of Medicine, University of Padova, Padova, Italy
  9. 9Cliniques Universitaires Saint-Luc, Université catholique de Louvain, Brussels, Belgium
  10. 10Department of Medicine, University of Cambridge, Cambridge, UK
  11. 11Rheumatology Unit, Department of Clinical and Experimental Medicine, University of Pisa, Pisa, Italy
  12. 12Division of Rheumatology, Department of Medicine Solna, Karolinska Institutet, Karolinska University Hospital, Stockholm, Sweden
  13. 13Rheumatology, Clinical Immunology and Allergy, University Hospital of Heraklion, Heraklion, Crete, Greece
  14. 14Laboratory of Autoimmunity and Inflammation, Biomedical Research Foundation of the Academy of Athens, Athens, Greece
  1. Correspondence to Dr Dimitrios T Boumpas, Rheumatology and Clinical Immunology, National and Kapodistrian University of Athens, Athens 12462, Greece; boumpasd{at}uoc.gr

Abstract

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
  • systemic
  • autoimmune diseases
  • glucocorticoids
  • 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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Data availability statement

All data relevant to the study are included in the article or uploaded as online supplemental information.

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Footnotes

  • GB, AF and DTB are joint senior authors.

  • Handling editor Josef S Smolen

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  • 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.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

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