Why and how should we measure disease activity and damage in lupus?

Area of Science:

• Rheumatology
• Clinical Immunology
• Patient-Reported Outcomes

Background:

• Assessing disease activity, flare, and permanent damage in Systemic Lupus Erythematosus (SLE) presents significant clinical challenges.
• Existing indices like SLEDAI, SLEDAI-2K, and SELENA-SLEDAI measure global disease activity, while BILAG focuses on organ-specific activity, offering greater detail at the cost of complexity.

Purpose of the Study:

• To review current methods for assessing SLE disease activity, damage, and their correlation with patient-reported outcomes.
• To highlight the limitations of existing indices in capturing the full impact of SLE on patients' quality of life and accurately measuring disease flare.

Main Methods:

• Review of established indices for SLE assessment: SLEDAI, SLEDAI-2K, SELENA-SLEDAI (global activity), BILAG (organ-specific activity), SRI (composite index), and SLICC/SDI (damage).
• Examination of patient-reported outcome measures including HRQoL, HAQ, SF-36, and Lupus QoL.
• Consideration of applicability and modifications for pediatric SLE populations.

Main Results:

• While indices like BILAG capture organ-specific changes effectively, they are complex. The SRI composite index is utilized in recent clinical trials.
• Damage assessment using SLICC/SDI correlates with prognosis but does not correlate well with patient-reported quality of life or disability.
• Existing disease activity and damage indices do not adequately reflect the impact on health-related quality of life (HRQoL) or disability.

Conclusions:

• Advances in SLE measurement tools have been made, but accurately capturing disease flare remains a significant challenge.
• Indices for disease activity and damage require further refinement to align with patient-centered outcomes like HRQoL and disability.
• Pediatric SLE assessment necessitates adapted tools, such as a modified SLICC/SDI index.