Article Text

PDF

2008–2018: a decade of recommendations for systemic lupus erythematosus
  1. Dimitrios T Boumpas1,2,
  2. George K Bertsias3,
  3. Antonis Fanouriakis1
  1. 1 Medical School, National and Kapodestrian University of Athens, Athens, Greece
  2. 2 University of Cyprus, Medical School, Nicosia, Cyprus
  3. 3 Rheumatology, Clinical Immunology and Allergy, University of Crete, Medical School, Heraklion, Greece
  1. Correspondence to Dr Dimitrios T Boumpas, Medical School, National and Kapodestrian University of Athens, Athens 124 62, Greece; boumpasd{at}uoc.gr

Statistics from Altmetric.com

Recommendations represent a popular way of integrating evidence-based medicine to clinical practice. These systematically developed statements can assist practitioner and patient decisions about appropriate healthcare, facilitate teaching of students and physicians, and educate patients. In 2008, the first European League Against Rheumatism (EULAR) recommendations for the management of general systemic lupus erythematosus (SLE) were published in the Annals of the Rheumatic Diseases (ARD).1 These were based on a combination of evidence and expert opinion, and followed the standard EULAR operating procedures. The effort involved experts on SLE, skilled methodologists and meticulous fellows who undertook an exhaustive systematic literature research (SLR). In this EULAR-endorsed project, a panel of European lupus experts was first updated on current literature and issues on SLE, and then developed and voted on the questions to be included in the SLR in an open and rigorous process. During the second phase, the results of the SLR were presented to the panel which then formulated, graded and voted on the recommendations. Recommendations covered the diagnosis, monitoring and management of general SLE with a few statements on neuropsychiatric and renal disease. Other EULAR panels also prepared recommendations for clinical trials in SLE,2 3 as well as more specific recommendations on the diagnosis and management of neuropsychiatric SLE4 and lupus nephritis,5 the latter in collaboration with the European Renal Association–European Dialysis Transplantation Association.

Subsequently, in 2012, the American College of Rheumatology developed guidelines for screening, treatment and management of lupus nephritis.6 In the same year, the Kidney Disease Improving Global Outcomes—an international organisation—developed guidelines for the management of lupus nephritis.7 All three sets of lupus nephritis guidelines were published in the same year and were based on the same body of evidence. As expected, their main statements agreed, but there were also notable differences reflecting the focus and composition of each group (reviewed in Wilhelmus et al 8).

More recently, the British Society for Rheumatology (BSR) also published guidelines for the diagnosis, monitoring and management of SLE in adults.9 Notably, in the BSR guidelines, lupus is divided into mild, moderate and severe disease with treatment recommendations adjusted accordingly. EULAR has also recently updated its recommendations, and these are currently under review.

This ‘flurry’ of recommendations clearly demonstrates a perceived need in the community to avoid fragmentation and optimise the management of SLE, a complex disease where multiple medical specialties are often involved in the care of patients, by establishing an integrated approach based on widely accepted principles and evidence-based recommendations. Crucial elements in developing credible recommendations include (1) a clear understanding of the target group to be following these recommendations (ie, generalists vs specialists vs lupus experts), (2) the quality of expertise and the inclusiveness of experts with differing views, (3) the inclusion of health professionals and patients, and (4) the rigorousness of the SLR methodology and its assessment. It is crucial that all interested parties and stakeholders such as physicians, patients, government bodies, insurance agencies and third payers realise that recommendations are developed for ‘group of patients’ to improve homogeneity of care, and they cannot limit physicians’ freedom or substitute for their clinical judgement in treating ‘individual’ patients. In simple terms, recommendations ‘are not the law’ rather an effort to provide general guidance to physicians treating patients. To use the airplane analogue, recommendations are the ‘manual of procedures’ not to substitute for the pilot’s experience and judgement. An important measure of success for each set of recommendations is reaching the target group of physicians and their compliance. Accordingly, a limited number of simple, crystal clear, concise and unequivocal statements in an eye-friendly and user-friendly format (eg, using diagrams and algorithms) are of paramount importance.

In ARD, a group of leading lupus experts from the Latin American Group for the Study of Lupus (Grupo Latinoamericano De Estudio del Lupus)–Pan-American League of Associations of Rheumatology presents their own recommendations for the management of SLE.10 The authors argue that although guidelines for SLE treatment do exist, there is scarce evidence to support specific therapies for Latin American patients. Accordingly, in their work, the authors have also considered the impact of racial/ethnic background and socioeconomic status on lupus outcomes and treatment response. Medication variables such as cost and availability were also considered since they may affect adherence and are relevant in decision-making. The recommendations are presented by organ involved with the following format: (1) interventions considered for evaluation; (2) benefits and harms of treatments; (3) recommendation statement with grading of evidence. Although SLE manifestations tend to occur simultaneously in more than one organ, in most cases, treatment directed to the more severe manifestation(s) is also effective for the less severe disease manifestations.

Undoubtedly, regional efforts to develop treatment recommendations could facilitate the dissemination and implementation in local communities. Yet, there is little evidence to support Latin American–specific lupus therapies and interventions. In our opinion, these recommendations represent a regional effort to develop guidelines with the potential of improved penetration to the community. The presented evidence (found in online supplementary material) is—in our judgement—biased towards (the few) randomised controlled trials—as opposed to observational studies—in SLE, which is a limitation since valuable real-life data might have been ignored. Experience has shown that physicians using recommendations also seek for practical information such as working definitions for treatment response (or failure), or guidance on the dosage of drugs (eg, corticosteroids), or the duration of their use. Inclusion of such information in the subsequent updates could increase the usefulness of these recommendations.

Notwithstanding these limitations, the rheumatological community welcomes the efforts of this active group of SLE experts from Latin America and eagerly awaits to see the dissemination and usage of the recommendations in their community, accompanied by studies measuring their impact on improving the quality of care for patients with lupus.

References

View Abstract

Footnotes

  • Handling editor Josef S Smolen

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Patient consent Not required.

  • Provenance and peer review Commissioned; externally peer reviewed.

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.

Linked Articles

  • Recommendation
    Bernardo A Pons-Estel Eloisa Bonfa Enrique R Soriano Mario H Cardiel Ariel Izcovich Federico Popoff Juan M Criniti Gloria Vásquez Loreto Massardo Margarita Duarte Leonor A Barile-Fabris Mercedes A García Mary-Carmen Amigo Graciela Espada Luis J Catoggio Emilia Inoue Sato Roger A Levy Eduardo M Acevedo Vásquez Rosa Chacón-Díaz Claudio M Galarza-Maldonado Antonio J Iglesias Gamarra José Fernando Molina Oscar Neira Clóvis A Silva Andrea Vargas Peña José A Gómez-Puerta Marina Scolnik Guillermo J Pons-Estel Michelle R Ugolini-Lopes Verónica Savio Cristina Drenkard Alejandro J Alvarellos Manuel F Ugarte-Gil Alejandra Babini André Cavalcanti Fernanda Athayde Cardoso Linhares Maria Jezabel Haye Salinas Yurilis J Fuentes-Silva Ana Carolina Montandon de Oliveira e Silva Ruth M Eraso Garnica Sebastián Herrera Uribe Diana Gómez-Martín Ricardo Robaina Sevrini Rosana M Quintana Sergio Gordon Hilda Fragoso-Loyo Violeta Rosario Verónica Saurit Simone Appenzeller Edgard Torres dos Reis Neto Jorge Cieza Luis A González Naranjo Yelitza C González Bello María Victoria Collado Judith Sarano Soledad Retamozo María E Sattler Rocio V Gamboa-Cárdenas Ernesto Cairoli Silvana M Conti Luis M Amezcua-Guerra Luis H Silveira Eduardo F Borba Mariana A Pera Paula B Alba Moreyra Valeria Arturi Guillermo A Berbotto Cristian Gerling Carla A Gobbi Viviana L Gervasoni Hugo R Scherbarth João C Tavares Brenol Fernando Cavalcanti Lilian T Lavras Costallat Nilzio A Da Silva Odirlei A Monticielo Luciana Parente Costa Seguro Ricardo M Xavier Carolina Llanos Rubén A Montúfar Guardado Ignacio Garcia de la Torre Carlos Pineda Margarita Portela Hernández Alvaro Danza Marlene Guibert-Toledano Gil Llerena Reyes Maria Isabel Acosta Colman Alicia M Aquino Claudia S Mora-Trujillo Roberto Muñoz-Louis Ignacio García Valladares María Celeste Orozco Paula I Burgos Graciela V Betancur Graciela S Alarcón