ABSTRACT
Introduction
Systemic lupus erythematosus (SLE) is a multisystem disease with varied manifestations and course. Variation in presentation among patients, and within the same patient, there may be varied manifestations over time. It has been difficult to measure the extent of disease activity accurately. Several investigators and groups have developed definitions of disease activity and methods to measure it. Consequently, there are currently several instruments to measure disease activity as well as damage in patients with SLE.
Areas covered
This review covers currently available evidence on measures of disease activity in SLE. It discusses potential avenues for further development of new measures and the refinement of existing tools to improve disease activity measures in research and clinical care settings.
Expert opinion
Given the complexity and heterogeneity of the disease, further work and tools are needed to assess disease activity better. Organ-specific measures for cutaneous, renal, and joint manifestations are needed for a detailed assessment of disease activity in conjunction with the use of disease generic tools (e.g. SLEDAI). New tools such as the SLE Disease Activity Index-Glucocorticoid Index (SLEDAI-2 KG) incorporating glucocorticoid doses to describe disease activity, SLE-DAS and SLEDAI-2 K RI-50 to record partial improvements could also be helpful.
Article highlights
Measuring disease activity in SLE patients is challenging mainly due to the heterogeneity of patients
Global disease activity measures such as the SLEDAI-2K and the PGA have been commonly used in clinical practice. The BILAG-2004 has a complex detailed glossary and is time-consuming, making it challenging for use in clinical practice. The new Easy BILAG is a good alternative.
Organ-specific measures, such as skin and renal measures, are used more frequently in recent trials and have shown good outcomes.
SRI-4 and BICLA are the most commonly used composite scores in SLE clinical trials.
Currently available disease activity measures and composite scores have resulted in multiple negative trials and discordant results. Further research and better patient assessment tools may improve patient outcomes in clinical practice and research settings.
Declaration of interest
D Gladman received consulting fees from AstraZeneca, BMS, GSK and UCB pharma. Z Touma received consulting fees from AbbVie Inc, UCB Biopharma SRL, Sarkana Pharma Inc., Janssen Inc., GlaxoSmithKline Inc. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.
Reviewer disclosures
Peer reviewers on this manuscript have no relevant financial or other relationships to disclose.