The lupus damage index revision program: results from the item generation and reduction phases

Objective

A data-driven and expert/patient consensus-based project to develop a revised Systemic Lupus International Collaborating Clinics (SLICC)/American College of Rheumatology (ACR) Damage Index (SDI) is under way supported by SLICC, ACR, and the Lupus Foundation of America. Our objective is to report the item generation and reduction phase results for a revised SDI.

Methods

Item generation included a literature review by literature review groups and a Delphi exercise of international systemic lupus erythematosus experts and patients. Item reduction involved Delphi rounds in which items with a median appropriateness score of ≤ 4 of 9 were excluded. A 14-member item reduction committee assessed remaining items and removed those that did not reflect the damage construct, were rare, or were not feasible to assess. The clinical domain groups then refined the remaining items and their definitions.

Results

The Delphi panel included 146 individuals from 35 countries. The Delphi exercise nominated 2256 items, and the literature review identified 117 items. After removing redundancies, 226 candidate items remained. Subsequent Delphi rounds, followed by review by the item reduction committee and clinical domain groups, resulted in 39 items across 13 domains. Eleven items from the original SDI, including proteinuria and cranial neuropathy, were removed and several new items were proposed, including growth failure/reduced final height and adrenal insufficiency. Severity-based subitems are proposed for 17 items (43.6%).

Conclusion

This data-driven and expert/patient consensus-based process has proposed 39 candidate items, some with subitems, and definitions for a revised SDI. Weighting of items and subitems is underway to develop a clinical scoring system.