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.