A contemporary and expanded conceptual framework for damage in systemic lupus erythematosus (SLE) has been developed that integrates purpose, items, weighting, reversibility, impact, timeframe, attribution, and perspective, as published in Arthritis Care & Research.
In a cross-sectional qualitative study, researchers used a content analytic approach to evaluate the current construct of damage in SLE.
Adult and pediatric SLE experts, SLE researchers/coordinators, methodologists, trainees, and members of partner organizations (Systemic Lupus International Collaborating Clinics/American College of Rheumatology [SLICC/ACR]) served as stakeholders. Lectures were presented on the historic concept of damage in SLE, development of SLICC Damage Index (SDI), SLE damage assessment in pediatric populations, and methodology of index development. Small group sessions were conducted, with participants divided to ensure that specific geographic regions were not overrepresented in each group. Small-group data were analyzed using Hsieh and Shannon’s qualitative content analytic approach. All participants could contribute to the consensus meeting sessions. The thematic clusters and conceptual framework were presented back to the group for review.
Topics included weighting that could affect how related items may be weighted differently and whether weighting actually improved the index; whether reversibility of SLE damage could improve or such damage be surgically corrected; impact of quality of life, functional impairment, disability, psychosocial impact, and cost; suitability of the 6-month time frame that an item needed to present to score in the index; attribution of items occurring prior to diagnosis; and perspective from both the patient and physician.
“The original purpose of the SDI, to measure morbidity in SLE, distinct from disease activity continues to hold true,” the researchers concluded. “There is agreement that damage is the result of cumulative insults. Consensus was achieved that the damage index is primarily a discriminative index, meant for research purposes, applicable across the life span. This purpose should be balanced by items that are medically acceptable and feasible. However, the index may be secondarily used in general clinical practice, as an educational tool or as an evaluative index. For its wider use in the community, trade-offs between technological advancement [vs] feasibility will need to be considered,” they added.
Johnson SR, Gladman DD, Brunner HI, et al. Evaluating the construct of damage in systemic lupus erythematosus. Arthritis Care Res (Hoboken). Published online December 28, 2021. doi:10.1002/acr.24849