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Multicenter validation of a new quality of life measure in pediatric lupus
L Nandini Moorthy1, Margaret G E Peterson, Maria Baratelli
1Robert Wood Johnson Medical School, University of Medicine and Dentistry of New Jersey, New Brunswick, NJ 08901, USA. lnmoorthy@mac.com
Insights
A new scale, the Simple Measure of the Impact of Lupus Erythematosus in Youngsters (SMILEY), effectively measures health-related quality of life in children with pediatric systemic lupus erythematosus (SLE). This validated tool offers a reliable way to assess QOL impacts in pediatric SLE patients.
Area of Science:
- Pediatric Rheumatology
- Health Outcomes Research
- Psychometrics
Background:
- Pediatric systemic lupus erythematosus (SLE) is a chronic condition with significant effects on children's quality of life (QOL).
- Existing health-related QOL (HRQOL) scales lack specificity for pediatric SLE patients.
- A validated, child-specific HRQOL measure is needed for accurate assessment and management.
Purpose of the Study:
- To develop and validate a novel, pediatric SLE-specific health-related QOL scale.
- To create a tool that captures children's self-perception of QOL impacted by SLE.
- To establish a reliable instrument for use in clinical practice and research.
Main Methods:
- The Simple Measure of the Impact of Lupus Erythematosus in Youngsters (SMILEY) scale was developed using qualitative research with pediatric SLE patients and parents.
- SMILEY includes parallel child and parent reports assessing four domains: effect on self, limitations, social impact, and SLE burden.
- Validation involved assessing face, content, construct, and concurrent validity, internal consistency, test-retest reliability, and child-parent agreement in a cross-sectional study.
Main Results:
- The study included 86 children with SLE and 80 parents.
- SMILEY demonstrated strong validity (face, content, construct, concurrent) and reliability (test-retest, internal consistency).
- Moderate agreement was observed between child and parent SMILEY reports.
Conclusions:
- The Simple Measure of the Impact of Lupus Erythematosus in Youngsters (SMILEY) is a brief, user-friendly, valid, and reliable QOL scale for pediatric SLE.
- SMILEY accurately reflects children's self-perceived QOL related to SLE.
- The scale is anticipated to be highly useful in clinical settings, clinical trials, and outcomes research for pediatric SLE.
Objective:
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.
Methods:
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
Results:
Eighty-six children with SLE and 80 parents participated. SMILEY was found to have face, content, construct, and concurrent validity (Spearman's rank correlation [r(s)] >/=0.4); test-retest reliability (intraclass correlation coefficient [ICC] 0.9); and internal consistency (alpha = 0.9). Moderate agreement was found between child and parent SMILEY reports (ICC 0.7, r(s) = 0.5, P < 0.001).
Conclusion:
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.
