The Lupus Damage Index Revision Program: Results From the Item Generation and Reduction Phases

Area of Science:

• Rheumatology
• Clinical Epidemiology

Background:

• The Systemic Lupus International Collaborating Clinics (SLICC)/American College of Rheumatology (ACR) Damage Index (SDI) is a crucial tool for assessing long-term damage in systemic lupus erythematosus (SLE).
• A revision is needed to improve its comprehensiveness and relevance.
• This project is supported by SLICC, ACR, and the Lupus Foundation of America.

Purpose of the Study:

• To report the item generation and reduction phase results for a revised SDI.
• To develop a more accurate and comprehensive measure of cumulative organ damage in SLE patients.

Main Methods:

• Item generation involved a comprehensive literature review and a global Delphi exercise with SLE experts and patients.
• Item reduction utilized iterative Delphi rounds and assessment by a dedicated item reduction committee and clinical domain groups.
• Items with low median appropriateness scores (≤4/9) or those not reflecting the damage construct, rarity, or feasibility were excluded.

Main Results:

• The initial generation phase yielded 2,256 items from the Delphi exercise and 117 from literature review, reduced to 226 candidate items.
• The iterative reduction process resulted in 39 candidate items across 13 domains for the revised SDI.
• Eleven original SDI items were removed (e.g., proteinuria, cranial neuropathy), and new items were proposed (e.g., growth failure, adrenal insufficiency).
• Severity-based subitems were proposed for 43.6% (17/39) of the candidate items.

Conclusions:

• A revised SDI has been proposed with 39 candidate items and definitions, developed through a data-driven, expert, and patient consensus process.
• The next steps involve weighting these items and subitems to create a clinical scoring system.
• This revised SDI aims to provide a more refined assessment of long-term damage in SLE.