Background/Purpose: The current Systemic Lupus Erythematosus Damage Index (SDI) is a robust instrument, but is limited by missing items, restricted applicability in pediatric patients, and outdated item definitions. 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 underway supported by SLICC, ACR and the Lupus Foundation of America. Our objective was to report the item generation and item reduction phase results for developing a revised SDI.

Methods: Item generation included a literature review by Literature Review Groups and a Delphi exercise of international SLE experts and patients. Item reduction involved Delphi rounds where items with a median appropriateness score of ≤ 4 out of 9 were excluded. A 14-member Item Reduction Committee assessed the remaining items and removed those that did not reflect the damage construct, were excessively 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. Item generation identified 226 initial candidate items. The Delphi exercise, review by the Item Reduction Committee and Clinical Domain Groups resulted in removal of 36, 126 and 25 items, respectively. This resulted in 39 items across 13 clinical domains. Eleven items from the original SDI, including chronic peritonitis, cranial neuropathy, mesenteric insufficiency, muscle atrophy or weakness, osteomyelitis, pancreatic insufficiency requiring enzyme replacement or with pseudocyst, pleural fibrosis, proteinuria, shrinking lung, skin ulceration (excluding thrombosis), and stricture or upper gastrointestinal tract surgery were removed. Several new items were proposed, such as growth failure/reduced final height and adrenal insufficiency. Sub-categorizing items based on severity or grade is proposed for 17 (43.6%) proposed items. Additionally, the Clinical Domain Groups developed definitions for each of the items, based on their clinical expertise, current evidence-based practice or specialty guidelines.

Conclusion: This data-driven and expert/patient consensus-based process has proposed 39 candidate items, some with sub-items, and with definitions for a revised SDI. Weighting of items and sub-items is now underway to increase the sensitivity and responsiveness of any new index.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/lupus-damage-index-revision-item-generation-and-reduction-phases/