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Interdisciplinary Clinical Practice Guidelines for patient-centred management of juvenile-onset systemic lupus erythematosus

EULAR Rheumatology Open, vol. 1, pp. 380–393

Abstract

Objectives: To develop updated interdisciplinary clinical practice guidelines for the management of juvenile-onset systemic lupus erythematosus (jSLE) in a patient-centred, treat-to-target (T2T) approach. Methods: Recommendations were developed based on T2T principles around shared decision-making by a multidisciplinary team of experts including paediatric and adult rheumatologists, paediatric nephrologists, neurologists, cardiologists, pneumologists, radiologists, immunologists, and infectious disease specialists, geneticists, and ophthalmologists from Germany, Switzerland, Austria, the United Kingdom and Ireland, a psychologist, and a patient representative. The process followed the standard operating procedures of the German AWMF (Association of the Scientific Medical Societies in Germany). The team conducted an extensive literature review (2012-2024) of 40 clinically selected Population/Intervention/Comparison/Outcome questions. Overarching principles (OAP), overarching treatment strategies (OATS), and recommendations were formulated and explored in 2 online preconsensus meeting Delphi surveys with the experts. The results were discussed in 3 virtual consensus meetings using a modified nominal group technique to discuss, modify and vote on the OAP, OATS, and recommendations. All final document was approved by 2 external reviewers and the AWMF. Results: We reached consensus on 45 recommendations on the general assessment, diagnosis, monitoring, nonpharmacologic, and pharmacologic management of jSLE. We highlight organ-specific manifestations, such as central nervous system disease, jSLE-related antiphospholipid antibody syndrome, and juvenile lupus nephritis, and consider disease severity for treatment recommendations. Conclusions: We have developed updated interdisciplinary clinical practice guidelines to facilitate a patient-centred T2T approach to the management of patients with jSLE.

Authors 29

  1. Affiliation as printed

    Department of Pediatrics, Pediatric Rheumatology, Kinderkrankenhaus Amsterdamer Strasse, Cologne, Germany

  2. University of Cologne · University Hospital Cologne

    Affiliation as printed

    Pediatric Nephrology, Children's and Adolescents' Hospital, University Hospital of Cologne, Faculty of Medicine, University of Cologne, Cologne, Germany

  3. RWTH Aachen University

    Affiliation as printed

    Department of Pediatrics, Division of Pediatric Neurology, RWTH Aachen University, Aachen, Germany

  4. Leibniz Association · German Rheumatism Research Centre · Berlin Institute of Health at Charité - Universitätsmedizin Berlin · Charité - Universitätsmedizin Berlin

    Affiliation as printed

    Berlin Institute of Health at Charité-Universitätsmedizin Berlin, Berlin, Germany

    Department of Pediatric Respiratory Medicine, Immunology and Critical Care Medicine, Charité-Universitätsmedizin Berlin, Berlin, Germany

    Deutsches Rheuma-Forschungszentrum (DRFZ), an institute of the Leibniz Association, Berlin, Germany

    German Center for Child and Adolescent Health (DZKJ), Partner Site Berlin, Berlin, Germany

  5. University College Dublin · University of Calgary

    Affiliation as printed

    Department of Pediatrics, Cumming School of Medicine, University of Calgary, AB, Canada

    Rheumatology, Childrens Health Ireland, and University College Dublin, Ireland, Dublin, Ireland

  6. Cincinnati Children's Hospital Medical Center · University of Cincinnati

    Affiliation as printed

    UC Department of Pediatrics, University of Cincinnati, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA

  7. Danube Private University · Innsbruck Medical University

    Affiliation as printed

    Department of Pediatrics, Medical University Innsbruck, Innsbruck and Department of Medicine,Faculty of Medicine and Dentistry, Danube Private University, Krems, Austria

  8. Universitätsklinikum Tübingen · University of Tübingen

    Affiliation as printed

    Centre for Ophthalmology, University Hospital Tuebingen, Tuebingen, Germany

  9. University Children’s Hospital Basel · University Hospital Carl Gustav Carus · Technische Universität Dresden

    Affiliation as printed

    Department of Pediatric Radiology, University Children`s Hospital Basel UKBB, Basel, Switzerland

    Department of Radiology, Faculty of Medicine Carl Gustav Carus, TU, Dresden, Germany

  10. University of Liverpool · Alder Hey Children's NHS Foundation Trust · Alder Hey Children's Hospital

    Affiliation as printed

    Department of Paediatric Rheumatology, Alder Hey Children's NHS Foundation Trust Hospital, Liverpool, UK

    Department of Women's & Children's Health, Institute of Life Course and Medical Sciences, University of Liverpool, Liverpool, UK

  11. University of Münster · University Hospital Münster

    Affiliation as printed

    Department of Pediatric Rheumatology and Immunology, Münster University Hospital, Münster, Germany

  12. Klinikum Stuttgart

    Affiliation as printed

    Center for Pediatric Rheumatology, Klinikum Stuttgart, Stuttgart, Germany

  13. University of Cologne · University Hospital Cologne

    Affiliation as printed

    Department of Pediatrics, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany

  14. Universität Ulm · University Hospital Ulm

    Affiliation as printed

    Department of Pediatrics and Adolescent Medicine, Ulm University Medical Center, Ulm, Germany

  15. Affiliation as printed

    Praxis Kamitz, Kinder- und Jugendmedizin und Kinderrheumatologie, Aachen, Germany

  16. Technische Universität Dresden

    Affiliation as printed

    Department of Pediatrics, Medical Faculty Carl Gustav Carus, Technische Universität Dresden, Dresden, Germany

    German Center for Child and Adolescent Health (DZKJ), Partner Site Leipzig/Dresden, Dresden, Germany

  17. Essen University Hospital

    Affiliation as printed

    Division of Pediatric Cardiology and Rheumatology, University Hospital Essen, Essen, Germany

  18. Technische Universität Dresden

    Affiliation as printed

    Department of Pediatrics, Medical Faculty Carl Gustav Carus, Technische Universität Dresden, Dresden, Germany

  19. Technische Universität Dresden

    Affiliation as printed

    Division of Rheumatology, Department of Medicine III, and University Centre for Autoimmune and Rheumatic Entities (UCARE), University Medical Centre and Faculty of Medicine, TU Dresden, Dresden, Germany

  20. Affiliation as printed

    Lupus Erythematodes Selbsthilfegemeinschaft e.V. (lupus patient organisation), Wuppertal, Germany

  21. Medizinische Hochschule Hannover · German Center for Lung Research

    Affiliation as printed

    Clinic for Pediatric Pneumology, Allergology and Neonatology, Hannover Medical School, Hannover, Germany; German Center for Lung Research (DZL/BREATH), Hannover, Germany

  22. Affiliation as printed

    German Center for Child and Adolescent Health (DZKJ), Partner Site Leipzig/Dresden, Dresden, Germany

  23. University Medical Center Hamburg-Eppendorf

    Affiliation as printed

    Department of Paediatrics, University Medical Center Hamburg-Eppendorf, Hamburg, Germany

  24. RWTH Aachen University

    Affiliation as printed

    Department of Pediatrics, Pediatric Rheumatology, RWTH Aachen University, Aachen, Germany

  25. Heinrich Heine University Düsseldorf

    Affiliation as printed

    Department of Rheumatology & Hiller Research Unit Rheumatology, UKD, Heinrich-Heine University, Düsseldorf, Germany

  26. Heidelberg University · University Hospital Heidelberg

    Affiliation as printed

    Department of Pediatrics I, University Children's Hospital, Heidelberg, Germany

  27. University Hospital of Bern · RWTH Aachen University

    Affiliation as printed

    Department of Pediatrics, Pediatric Rheumatology, Inselspital, Bern, Switzerland

    Department of Pediatrics, Pediatric Rheumatology, RWTH Aachen University, Aachen, Germany

  28. Medizinische Hochschule Hannover

    Affiliation as printed

    Department of Pediatric Kidney, Liver and Metabolic Diseases, Hannover Medical School, Hannover, Germany

  29. Technische Universität Dresden

    Affiliation as printed

    Department of Pediatrics, Medical Faculty Carl Gustav Carus, Technische Universität Dresden, Dresden, Germany

    German Center for Child and Adolescent Health (DZKJ), Partner Site Leipzig/Dresden, Dresden, Germany

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References 65