Extract

Progress in medicine is mostly based on evidence from international collaborations and trials, which are especially needed in infrequent diseases, such as SLE. In addition to EULAR recommendations, national guidelines for the management of SLE are needed to optimize management consistent with current evidence and specific national practices. British experts publish in this issue of Rheumatology an excellent composition based on evidence-based medicine (including literature until June 2015) and eminent experiences providing comprehensive recommendations covering diagnosis, assessment, monitoring and treatment of SLE [1].

As there are no validated diagnostic criteria for SLE, the British experts indirectly refer to the SLICC classification criteria for diagnosis [2]. As a multi-system autoimmune disorder, the diagnosis of SLE requires a combination of clinical features and the presence of at least one relevant immunological abnormality, one autoantibody or low complement levels. As this combination is a good screening tool, with higher sensitivity than specificity, every patient at risk of lupus should be referred to a physician with experience of managing lupus, who should confirm the diagnosis. Overall, the guideline assumes that there are better outcomes for lupus patients in centres with experience of managing lupus along with input from multidisciplinary teams including nurse specialists, physiotherapists and a variety of other specialists. This strategy supports the general idea of specialized centres for rare diseases (such as the European Reference Networks (ERN), ReCONNET, which includes SLE). The advantages of such a concept are obvious; the risks can be found in a greater regional distance to specialized care, for example, in emergencies, and in increasing gaps in knowledge. Therefore, it might be beneficial for future guidelines to define clear responsibilities of all partners in lupus care; otherwise, our patients may be lost in space.

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