- University of California, San Diego United States
- University System of Ohio United States
- University of Calgary Canada
- Johns Hopkins University United States
- University of Amsterdam Netherlands
- University of Manitoba Canada
- University of London United Kingdom
- University of Pisa Italy
- Medical University of South Carolina United States
- University Health Network Canada
- University of Paris France
- Feinstein Institute for Medical Research United States
- University of Birmingham United Kingdom
- Manchester Academic Health Science Centre United Kingdom
- University of Strasbourg France
- Copenhagen University Hospital Denmark
- University of Alabama at Birmingham United States
- University of Cincinnati United States
- Amsterdam UMC - Vrije Universiteit Amsterdam Netherlands
- Hanyang University Seoul Hospital Korea (Republic of)
- University of Copenhagen Denmark
- National Institute for Health Research United Kingdom
- National University Heart Centre Singapore Singapore
- NIHR Manchester Biomedical Research Centre United Kingdom
- Columbia University Medical Center United States
- University of Toronto Canada
- Karolinska University Hospital Sweden
- Hospital de Cruces Spain
ObjectiveThe Systemic Lupus International Collaborating Clinics (SLICC), American College of Rheumatology (ACR), and the Lupus Foundation of America are developing a revised systemic lupus erythematosus (SLE) damage index (the SLICC/ACR Damage Index [SDI]). Shifts in the concept of damage in SLE have occurred with new insights into disease manifestations, diagnostics, and therapy. We evaluated contemporary constructs in SLE damage to inform development of the revised SDI.MethodsWe conducted a 3‐part qualitative study of international SLE experts. Facilitated small groups evaluated the construct underlying the concept of damage in SLE. A consensus meeting using nominal group technique was conducted to achieve agreement on aspects of the conceptual framework and scope of the revised damage index. The framework was finally reviewed and agreed upon by the entire group.ResultsFifty participants from 13 countries were included. The 8 thematic clusters underlying the construct of SLE damage were purpose, items, weighting, reversibility, impact, time frame, attribution, and perspective. The revised SDI will be a discriminative index to measure morbidity in SLE, independent of activity or impact on the patient, and should be related to mortality. The SDI is primarily intended for research purposes and should take a life‐course approach. Damage can occur before a diagnosis of SLE but should be attributable to SLE. Damage to an organ is irreversible, but the functional consequences on that organ may improve over time through physiological adaptation or treatment.ConclusionWe identified shifts in the paradigm of SLE damage and developed a unifying conceptual framework. These data form the groundwork for the next phases of SDI development.