Unfortunately, however, patients with SLE still suffer from significant clinical manifestations and often irreversible organ damage, including accelerated atherosclerotic vascular disease 2, osteoporosis 3, and other sequelae of disease activity and immunosuppressive therapies 4. The overall prognosis in systemic lupus erythematosus (SLE) has improved since the 1950s, with 10 year survival rates now 85% or better 1. Its ultimate value will be determined in longitudinal studies. The LDIQ should allow expansion of SLE research. It has construct validity and correlations with health assessments similar to the SDI. In the NDB, the LDIQ correlated well with the comorbidity index (r = 0.45), the Short Form 36 physical component scale (r = 0.43), the Medical Research Council dyspnea scale (r = 0.40), disability (r = 0.37), and the Systemic Lupus Erythematosus Activity Questionnaire score (r = 0.37).ConclusionThe metric properties of the LDIQ are good compared with the SDI. Sensitivities were variable and lowest for damage, with 85% for all but neuropathy, reduced renal function, deforming arthritis, and alopecia. The LDIQ had a moderately high correlation with the SDI (Spearman's r = 0.50, P 80%, except for neuropathy. Six hundred five SLE participants in the community-based National Data Bank for Rheumatic Diseases (NDB) study completed the LDIQ and we assessed correlations with outcome and disability measures.ResultsThe mean LDIQ score was 3.3 (range 0-16) and the mean SDI score was 1.5 (range 0-9). We calculated sensitivity, specificity, Spearman's correlations, and agreement using the SDI as the gold standard. Subjects and physicians completed the instruments separately. After refinement, 569 English-speaking SLE subjects and 14 rheumatologists from 11 international SLE clinics participated in validation. Trained physicians must complete it, thus limiting utility where this is impossible.MethodsWe developed and pilot tested a self-assessed organ damage instrument, the Lupus Damage Index Questionnaire (LDIQ), in 37 SLE subjects and 7 physicians. ObjectiveThe Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index (SDI) is a validated instrument for assessing organ damage in systemic lupus erythematosus (SLE).
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