A multinational, data-driven and expert/patient consensus-based project to revise the SLICC/ACR Damage Index (SDI) for systemic lupus erythematosus (SLE), covering the item generation and reduction phases using Delphi methodology and literature review.
Starting from 2,256 Delphi-nominated and 117 literature-identified items (226 after removing redundancies), the process yielded 39 candidate items across 13 domains; 11 original SDI items (e.g., proteinuria, cranial neuropathy) were removed, new items (e.g., growth failure/reduced final height, adrenal insufficiency) were added, and 17 items (43.6%) now include severity-based subitems.
Item weighting — needed to produce an actual clinical scoring system — is not yet complete; the consensus panel, while large (146 individuals, 35 countries), may not capture all global practice variation; no psychometric validation data are reported at this stage.
The revised SDI is not yet ready for clinical use, but clinicians should anticipate meaningful changes — including removal of proteinuria and cranial neuropathy and addition of growth failure and adrenal insufficiency as damage items. Stay updated as item weighting and validation phases proceed.
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