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Lupus
Review
Systemic lupus erythematosus: state of the art on clinical practice guidelines
  1. Farah Tamirou1,
  2. Laurent Arnaud2,
  3. Rosaria Talarico3,
  4. Carlo Alberto Scirè4,
  5. Tobias Alexander5,
  6. Zahir Amoura6,
  7. Tadej Avcin7,
  8. Alessandra Bortoluzzi4,
  9. Ricard Cervera8,
  10. Fabrizio Conti9,
  11. Alain Cornet10,
  12. Hervé Devilliers11,
  13. Andrea Doria12,
  14. Micol Frassi13,
  15. Micaela Fredi13,
  16. Marcello Govoni4,
  17. Frederic Houssiau1,
  18. Ana Lladò14,
  19. Carla Macieira15,
  20. Thierry Martin16,
  21. Laura Massaro9,
  22. Maria Francisca Moraes-Fontes14,
  23. Cristina Pamfil16,
  24. Sabrina Paolino17,
  25. Chiara Tani18,
  26. Sander W Tas19,20,
  27. Maria Tektonidou21,
  28. Angela Tincani13,
  29. Ronald F Van Vollenhoven22,
  30. Stefano Bombardieri23,
  31. Gerd Burmester5,
  32. João Eurico Fonseca15,
  33. Ilaria Galetti24,
  34. Eric Hachulla25,
  35. Ulf Mueller-Ladner26,
  36. Matthias Schneider27,
  37. Vanessa Smith28,
  38. Maurizio Cutolo17,
  39. Marta Mosca18,29 and
  40. Nathalie Costedoat-Chalumeau30,31,32
  1. 1 Rheumatology Department, Cliniques universitaires Saint-Luc, Université catholique deLouvain, Bruxelles, Belgium
  2. 2 Service de rhumatologie, Hôpitaux Universitaires de Strasbourg, Centre National de Referencedes Maladies Auto-immunes et Systémiques Rares RESO, Strasbourg, France
  3. 3 Rheumatology Unit, AOU Pisana, Pisa, Italy
  4. 4 Section of Rheumatology, Department of Medical Sciences, University of Ferrara, Ferrara, Italy
  5. 5 Department of Rheumatology and Clinical Immunology, Charité – University Medicine Berlin, Berlin, Germany
  6. 6 Department of Internal Medicine, Hospital Pitié-Salpêtrière, Assistance Publique-Hôpitaux de Paris, Paris, France
  7. 7 Department of Allergology, Rheumatology and Clinical Immunology, University Children'sHospital, University Medical Centre Ljubljana, Ljubljana, Slovenia
  8. 8 Department of Autoimmune Diseases, Hospital Clínic, Barcelona, Spain
  9. 9 Rheumatology Unit, Dipartimento di Medicina Interna e Specialità Mediche, Università degliStudi di Roma La Sapienza, Rome, Italy
  10. 10 Lupus Europe, Brussels, Belgium
  11. 11 Department of Internal Medicine and Systemic Diseases, François-Mitterrand Teaching Hospital, University of Bourgogne-Franche-Comté, Dijon, France
  12. 12 Rheumatology Unit, Department of Medicine, AO Padova and University of Padua, Padua, Italy
  13. 13 Rheumatology and Clinical Immunology Unit, Civil Hospital, Brescia, Italy
  14. 14 Unidade de Doenças Auto-imunes/Medicina 7.2, Hospital de Curry Cabral, Centro Hospitalarde Lisboa Central, Lisbon, Portugal
  15. 15 Rheumatology Department, Hospital de Santa Maria, Centro Hospitalar Lisboa Norte, Lisbon Academic Medical Centre, Lisbon, Portugal
  16. 16 Department of Rheumatology, Emergency County Teaching Hospital, Cluj-Napoca, Romania
  17. 17 Research Laboratory and Academic Division of Clinical Rheumatology, Department of Internal Medicine, IRCCS Polyclinic Hospital San Martino, University of Genoa, Genoa, Italy
  18. 18 Rheumatology Unit, AOU Pisana, Pisa, Italy
  19. 19 Amsterdam UMC, Department of Clinical Immunology & Rheumatology and Department of Experimental Immunology, Amsterdam Infection and Immunity Institute, Meibergdreef 9, University of Amsterdam, Amsterdam, The Netherlands
  20. 20 Amsterdam Rheumatology & immunology Center (ARC), Academic Medical Center, Amsterdam, The Netherlands
  21. 21 Joint Rheumatology Academic Program, First Department of Propaedeutic Internal Medicine, School of Medicine, National and Kapodistrian University of Athens, Athens, Greece
  22. 22 Clinical Immunology & Rheumatology, Amsterdam Rheumatology & Immunology Center, Academic Medical Center/University of Amsterdam, Amsterdam, The Netherlands
  23. 23 University of Pisa, Pisa, Italy
  24. 24 FESCA - Federation of European Scleroderma Association, Milan, Italy
  25. 25 Département de Médecine Interne et Immunologie Clinique, Centre de Référence des Maladies Systémiques et Auto-Immunes Rares du Nord-Ouest (CERAINO), LIRIC, INSERM, Univ.Lille, CHU Lille, Lille, France
  26. 26 Department of Rheumatology and Clinical Immunology, Kerckhoff Clinic, Bad Nauheim, Germany
  27. 27 Department of Rheumatology, Universitätsklinikum Düsseldorf, Düsseldorf, Germany
  28. 28 Department of Rheumatology, Department of Internal Medicine, Ghent University Hospital, Ghent University, Ghent, Belgium
  29. 29 Rheumatology Unit, University of Pisa, Pisa, Italy
  30. 30 Assistance Publique-Hôpitaux de Paris (AP-HP), Internal Medicine Department, Cochin Hospital, Referral center for rare autoimmune and systemic diseases, Paris, France
  31. 31 Paris Descartes Sorbonne, Paris Cité University, Paris, France
  32. 32 INSERM U 1153, Center for Epidemiology andStatistics Sorbonne Paris Cité (CRESS), Paris, France
  1. Correspondence to Dr Nathalie Costedoat-Chalumeau; nathalie.costedoat{at}gmail.com; Dr Farah Tamirou; farah.tamirou{at}uclouvain.be

Abstract

Systemic lupus erythematosus (SLE) is the paradigm of systemic autoimmune diseases characterised by a wide spectrum of clinical manifestations with an unpredictable relapsing-remitting course. The aim of the present work was to identify current available clinical practice guidelines (CPGs) for SLE, to provide their review and to identify physicians’ and patients’ unmet needs. Twenty-three original guidelines published between 2004 and 2017 were identified. Many aspects of disease management are covered, including global disease management, lupus nephritis and neuropsychiatric involvement, management of pregnancies, vaccinations and comorbidities monitoring. Unmet needs relate with disease management of some clinical manifestations and adherence to treatment. Many patient’s unmet needs have been identified starting with faster diagnosis, need for more therapeutic options, guidelines on lifestyle issues, attention to quality of life and adequate education.

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0

https://doi.org/10.1136/rmdopen-2018-000793

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    Footnotes

    • Contributors All authors contributed to the manuscript.

    • Funding This publication was funded by the European Union’s Health Programme (2014-2020).

    • Disclaimer ERN ReCONNET is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. The ERNs are co-funded by the European Commission. The content of this publication represents the views of the authors only and it is their sole responsibility; it cannot be considered to reflect the views of the European Commission and/or the Consumers, Health, Agriculture and Food Executive Agency (CHAFEA) or any other body of the European Union. The European Commission and the Agency do not accept any responsibility for use that may be made of the information it contains.

    • Competing interests None declared.

    • Patient consent Not required.

    • Provenance and peer review Commissioned; externally peer reviewed.

    • Data sharing statement No additional data are available.