Health related quality of life (HRQOL) improvement in patients with SLE is defined as one of the treatment goals in the Treat to Target (T2T) recommendations and the 2019 EULAR recommendations for the management of SLE.1 2 However, the definitions of remission and low disease activity (LLDAS) do not address the health-related quality of life or disease burden. In fact, the physicians’ view on lupus dominated the development of remission criteria and it was postulated that a control of disease activity would improve QOL in patients with SLE.
The relationship between activity, organ damage, and HRQOL, however, remains complex and controversial, and the value of activity and damage indices as predictors of patient quality of life continues to be debated.3 The attainment of remission in SLE represents the main treatment target, but QOL and fatigue are still insufficiently controlled in the state of remission and, despite improvement of disease activity, QOL can remain unchanged over several years.
A patient’s perspective is still not accepted as equivalent to the physician’s perspective in treatment decisions. HRQOL is neither directly nor indirectly captured by disease activity instruments. Therefore, a better understanding of the patients’ experiences with the disease is crucial.4
Looking at the evidence of patient reported outcomes (PROs) as treatment targets for SLE, it is important to consider that, in clinical trials, the target response is mostly defined by changes in disease activity instruments and physician global assessments, while PROs were never used as the primary endpoint.
Studies to integrate the patient’s perspective with the physician’s definition of remission and low disease activity are needed.
Fanouriakis A, et al. 2019 update of the EULAR recommendations for the management of systemic lupus erythematosus. Ann Rheum Dis 2019 Jun;78(6):736–745.
Morand EF, Mosca M. Treat to target, remission and low disease activity in SLE. Best Pract Res Clin Rheumatol 2017 Jun;31(3):342–350.
Shi Y, Li M, et al. Relationship between disease activity, organ damage and health-related quality of life in patients with systemic lupus erythematosus: a systemic review and meta-analysis. Autoimmun Rev 2021 Jan;20(1):102691.
Kernder A, et al. The patient’s perspective: are quality of life and disease burden a possible treatment target in systemic lupus erythematosus? Rheumatology (Oxford) 2020 Dec 5;59(Suppl5):v63-v68.
Discuss quality of life in SLE, its determinants, discordance between physician’s outcomes measures and PROs and the significance of PROs in clinical trials
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