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Journal article
Development and Initial Validation of a Self-Assessed Lupus Organ Damage Instrument
Arthritis care & research (2010), v 62(4), pp 559-568
01 Apr 2010
PMID: 20391512
Featured in Collection : UN Sustainable Development Goals @ Drexel
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).
Conclusion. 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.
Metrics
Details
- Title
- Development and Initial Validation of a Self-Assessed Lupus Organ Damage Instrument
- Creators
- Karen H. Costenbader - Harvard University PressMunther Khamashta - Guy's and St Thomas' NHS Foundation TrustSilvia Ruiz-Garcia - Guy's and St Thomas' NHS Foundation TrustMaria Teresa Perez-Rodriguez - St Thomas Hosp, London, EnglandMichelle Petri - Johns Hopkins UniversityJennifer Elliott - University of PittsburghSusan Manzi - University of PittsburghElizabeth W. Karlson - Stanford UniversityTabitha Turner-Stokes - UCL AustraliaBonnie Bermas - Harvard University PressJonathan Coblyn - Harvard University PressElena Massarotti - Harvard University PressPeter Schur - Harvard University PressPatricia Fraser - Harvard University PressIris Navarro - University of AlabamaJohn G. Hanly - Dalhousie UniversityTimothy S. Shaver - Arthritis and Rheumatology Clinics of KansasRobert S. Katz - Rush UniversityEliza Chakravarty - Stanford UniversityPaul R. Fortin - University Health NetworkMartha L. Sanchez - University of Alabama at BirminghamJigna Liu - University of Alabama at BirminghamKaleb Michaud - Arthritis FoundationGraciela S. Alarcon - University of Alabama at BirminghamFrederick Wolfe - Arthritis Foundation
- Publication Details
- Arthritis care & research (2010), v 62(4), pp 559-568
- Publisher
- Wiley
- Number of pages
- 10
- Grant note
- American College of Rheumatology Office of the Director; National Science Foundation (NSF); NSF - Office of the Director (OD) National Data Bank for Rheumatic Diseases Arthritis Foundation UL1-RR-025005 / National Center for Research Resources; United States Department of Health & Human Services; National Institutes of Health (NIH) - USA; NIH National Center for Research Resources (NCRR) F32AR054278-01A1 / National Research Science HD051959 / National Institute of Mental Health, National Institute of Allergy and Infectious Diseases, National Institute of Child Health and Human Development; United States Department of Health & Human Services; National Institutes of Health (NIH) - USA; NIH National Institute of Allergy & Infectious Diseases (NIAID); NIH Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD); NIH National Institute of Mental Health (NIMH) AR43727 / Hopkins Lupus Cohort P60-AR047782; K24-AR002213-05; R01-AR49880; K24-AR052401 / NIH; United States Department of Health & Human Services; National Institutes of Health (NIH) - USA
- Resource Type
- Journal article
- Language
- English
- Academic Unit
- General Internal Medicine
- Web of Science ID
- WOS:000280979400018
- Scopus ID
- 2-s2.0-77950414914
- Other Identifier
- 991021933903504721
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- Collaboration types
- Domestic collaboration
- International collaboration
- Web of Science research areas
- Rheumatology