Objective. To devise a modified version of the Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index (SDI) for use in children and adolescents with systemic lupus erythematosus (SLE), based on the frequency and distribution of damage in' patients with juvenile-onset SLE and the sources of damage that are most suitable for inclusion in a pediatric damage index. Methods. In this cross-sectional study, damage was assessed through the SDI. Clinical assessments included evaluation of growth failure and delayed puberty, which were believed to be important sources of damage that are not incorporated in the SDI but should be included in a pediatric version of the instrument. Results. A total of 1,015 patients with juvenile-onset SLE in 39 countries were enrolled in the study. Of these, 405 patients (39.9%) had an SDI score of ≥1 (mean ± SD score 0.8 ± 1.4). Renal damage (13%), neuropsychiatric damage (10.7%), and musculoskeletal damage (10.7%) were observed most frequently, followed by ocular damage (8.2%) and skin damage (7.6%). Growth failure and delayed puberty were recorded in 15.3% and 11.3% of patients, respectively. A pediatric version of the SDI was devised, with inclusion of growth failure and delayed puberty as new domains. Conclusion. We propose a modified version of the SDI for use in patients with juvenile-onset SLE. This new instrument warrants prospective validation in other populations of patients seen in different clinical or research settings.
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