Dr. Harrison has received consultancies and/or honoraria (less than $10,000 each) from Amgen, Wyeth, Pfizer, and UCB.
Multicenter validation of a new quality of life measure in pediatric lupus†
Version of Record online: 28 SEP 2007
Copyright © 2007 by the American College of Rheumatology
Arthritis Care & Research
Volume 57, Issue 7, pages 1165–1173, 15 October 2007
How to Cite
Moorthy, L. N., Peterson, M. G. E., Baratelli, M., Harrison, M. J., Onel, K. B., Chalom, E. C., Haines, K., Hashkes, P. J. and Lehman, T. J. A. (2007), Multicenter validation of a new quality of life measure in pediatric lupus. Arthritis & Rheumatism, 57: 1165–1173. doi: 10.1002/art.22988
ClinicalTrials.gov identifier: NCT00280137.
- Issue online: 28 SEP 2007
- Version of Record online: 28 SEP 2007
- Manuscript Accepted: 16 FEB 2007
- Manuscript Received: 27 OCT 2006
- Rheumatology Research Training grant. Grant Number: T-32
- NIH/National Institute of Arthritis and Musculoskeletal and Skin Diseases. Grant Number: T32-AR-07517
- Fellowship in pediatric rheumatology at the Hospital for Special Surgery, New York, New York
- Masters in Epidemiology and Health Services Research at Cornell University, New York, New York
- University of Medicine and Dentistry of New Jersey Foundation grant
- Pfizer Clinical Scholar grant in rheumatology
- Quality of life;
- Pediatric scale;
- Systemic lupus erythematosus;
- Simple Measure of Impact of Lupus Erythematosus in Youngsters
Pediatric systemic lupus erythematosus (SLE) is a chronic fluctuating disease that significantly impacts quality of life (QOL). There is no pediatric SLE-specific health-related QOL (HRQOL) scale. Our objective was to develop and validate a new pediatric SLE-specific HRQOL scale.
We developed the Simple Measure of the Impact of Lupus Erythematosus in Youngsters (SMILEY) based on results of qualitative research of children with SLE and their parents. SMILEY has parallel child and parent reports with a 5-faces scale for responses. SMILEY comprises 4 domains: effect on self, limitations, social, and burden of SLE. In this cross-sectional study, we examined face, content, construct, and concurrent validity; internal consistency; test–retest reliability; and child-parent agreement for SMILEY. Children ≤18 years of age with SLE and their parents completed corresponding child and parent SMILEY reports, as well as other QOL and physical function scales. Qualified physicians assessed SLE activity, damage, and severity.
Eighty-six children with SLE and 80 parents participated. SMILEY was found to have face, content, construct, and concurrent validity (Spearman's rank correlation [rs] ≥0.4); test–retest reliability (intraclass correlation coefficient [ICC] 0.9); and internal consistency (α = 0.9). Moderate agreement was found between child and parent SMILEY reports (ICC 0.7, rs = 0.5, P < 0.001).
SMILEY is a brief, easily understood, valid, and reliable pediatric SLE-specific QOL scale. Because SMILEY assesses children's self-perception of QOL as impacted by SLE, we predict that it will have great utility in clinical practice, clinical trials, and outcomes research.