Evaluating the construct of damage in systemic lupus erythematosus

Sindhu R. Johnson, Dafna D. Gladman, Hermine I. Brunner, David Isenberg, Ann E. Clarke, Megan R.W. Barber, Laurent Arnaud, Paul R. Fortin, Marta Mosca, Alexandre Voskuyl, Susan Manzi, Cynthia Aranow, Anca Askanase, Graciela S. Alarcón, Sang Cheol Bae, Nathalie Costedoat-Chalumeau, Jessica English, Guillermo J. Pons-Estel, Bernardo A. Pons-Estel, Rebecca GilmanEllen Ginzler, John G. Hanly, Soren Jacobsen, Kenneth Kalunian, Diane L. Kamen, Chynace Lambalgen, Alexandra Legge, S. Sam Lim, Anselm Mak, Eric F. Morand, Christine Peschken, Michelle Petri, Anisur Rahman, Rosalind Ramsey-Goldman, John A. Reynolds, Juanita Romero-Diaz, Guillermo Ruiz-Irastorza, Jorge Sanchez-Guerrero, Elisabet Svenungsson, Zahi Touma, Murray Urowitz, Evelyne Vinet, Ronald F. van Vollenhoven, Heather Waldhauser, Daniel Wallace, Asad Zoma, Ian N. Bruce

Research output: Contribution to journalArticleResearchpeer-review

8 Citations (Scopus)


Objective: The Systemic Lupus International Collaborating Clinics, American College of Rheumatology and Lupus Foundation of America are developing a revised SLE 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. Methods: We 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. Results: Fifty participants from 13 countries were included. Eight thematic clusters underlying the construct of SLE damage were purpose, items, weighting, reversibility, impact, timeframe, 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. Conclusion: We 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.

Original languageEnglish
Pages (from-to)998-1006
Number of pages9
JournalArthritis Care & Research
Issue number5
Publication statusPublished - May 2023

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