title: Development and initial validation of a self-assessed lupus organ damage instrument.
abstract: OBJECTIVE
  The 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). Trained physicians must complete it, thus limiting utility where this is impossible.
  
  
  METHODS
  We developed and pilot tested a self-assessed organ damage instrument, the Lupus Damage Index Questionnaire (LDIQ), in 37 SLE subjects and 7 physicians. After refinement, 569 English-speaking SLE subjects and 14 rheumatologists from 11 international SLE clinics participated in validation. Subjects and physicians completed the instruments separately. We calculated sensitivity, specificity, Spearman's correlations, and agreement using the SDI as the gold standard. 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.
  
  
  RESULTS
  The mean LDIQ score was 3.3 (range 0-16) and the mean SDI score was 1.5 (range 0-9). The LDIQ had a moderately high correlation with the SDI (Spearman's r = 0.50, P < 0.001). Specificities of individual LDIQ items were >80%, except for neuropathy. Sensitivities were variable and lowest for damage, with <1% prevalence. Agreement between the SDI and LDIQ was >85% for all but neuropathy, reduced renal function, deforming arthritis, and alopecia. 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).
  
  
  CONCLUSIONS
  The metric properties of the LDIQ are good compared with the SDI. It has construct validity and correlations with health assessments similar to the SDI. The LDIQ should allow expansion of SLE research. Its ultimate value will be determined in longitudinal studies.
authors.affiliation: Brigham and Women's Hospital, Harvard Medical School, Boston, Massachusetts.
authors.forename: Karen H
authors.initials: KH
authors.lastname: Costenbader
authors.forename: Munther
authors.initials: M
authors.lastname: Khamashta
authors.forename: Silvia
authors.initials: S
authors.lastname: Ruiz-Garcia
authors.forename: Maria Teresa
authors.initials: MT
authors.lastname: Perez-Rodriguez
authors.forename: Michelle
authors.initials: M
authors.lastname: Petri
authors.forename: Jennifer
authors.initials: J
authors.lastname: Elliott
authors.forename: Susan
authors.initials: S
authors.lastname: Manzi
authors.forename: Elizabeth W
authors.initials: EW
authors.lastname: Karlson
authors.forename: Tabitha
authors.initials: T
authors.lastname: Turner-Stokes
authors.forename: Bonnie
authors.initials: B
authors.lastname: Bermas
authors.forename: Jonathan
authors.initials: J
authors.lastname: Coblyn
authors.forename: Elena
authors.initials: E
authors.lastname: Massarotti
authors.forename: Peter
authors.initials: P
authors.lastname: Schur
authors.forename: Patricia
authors.initials: P
authors.lastname: Fraser
authors.forename: Iris
authors.initials: I
authors.lastname: Navarro
authors.forename: John G
authors.initials: JG
authors.lastname: Hanly
authors.forename: Timothy S
authors.initials: TS
authors.lastname: Shaver
authors.forename: Robert S
authors.initials: RS
authors.lastname: Katz
authors.forename: Eliza
authors.initials: E
authors.lastname: Chakravarty
authors.forename: Paul R
authors.initials: PR
authors.lastname: Fortin
authors.forename: Martha L
authors.initials: ML
authors.lastname: Sanchez
authors.forename: Jigna
authors.initials: J
authors.lastname: Liu
authors.forename: Kaleb
authors.initials: K
authors.lastname: Michaud
authors.forename: Graciela S
authors.initials: GS
authors.lastname: Alarcón
authors.forename: Frederick
authors.initials: F
authors.lastname: Wolfe
mesh_terms: D000328:Adult; D000368:Aged; D005260:Female; D006801:Humans; D008180:Lupus Erythematosus, Systemic / Q000150:complications / Q000175:diagnosis*; D008297:Male; D008875:Middle Aged; D011788:Quality of Life; D012680:Sensitivity and Specificity; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires
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