Congruence Between Child Self-Reported and Caregiver-Proxy-Reported Health-Related Quality of Life in Children With Juvenile Idiopathic Arthritis and Systemic Lupus Erythematosus.

OBJECTIVE: To explore congruence between child self-reported and caregiver-proxy-reported health-related quality of life (HRQOL) over time in juvenile idiopathic arthritis (JIA) and childhood-onset systemic lupus erythematosus (cSLE), and to identify factors associated with the level of congruence. METHODS: Data were from an observational, longitudinal cohort study conducted to validate the Patient-Reported Outcomes Measurement Information System (PROMIS) measures. HRQOL was assessed at baseline, 6, and 12 months. Four hundred fifty-one children (8-17 years) diagnosed with JIA or cSLE and their caregivers completed the PROMIS Pediatric and Parent Proxy measures, respectively. A 1-way random-effects model was used to estimate the intraclass correlation coefficient (ICC) for congruence between child and caregiver reports, and multivariable mixed-effect models were used to identify associated demographic and clinical factors. RESULTS: The study cohort (87.1% JIA) had a mean age of 13.8 years and were 71.4% female. Across all HRQOL domains, child self-reported and caregiver-proxy-reported mobility, physical activity, fatigue, pain interference, depressive symptoms, and psychological stress had moderate associations (ICC 0.50-0.68), whereas child self-reported and caregiver-proxy-reported family relationships and anxiety were weakly associated (ICC 0.34-0.42). Older children had higher congruence with their caregivers on symptom domains (0.25 to 0.75 points) than younger children; female children had higher congruence with their caregivers on psychological symptoms (-2.20 to -1.98 points) than male children. CONCLUSION: Caregivers provide complementary information on the physical aspects of HRQOL, with a tendency to estimate worse symptoms and decreased functioning. Child self-report remains the gold standard for understanding HRQOL in pediatric populations with rheumatic diseases.

Duke Scholars

Author Laura Eve Schanberg Pediatrics, Rheumatology

Author Bryce B. Reeve Population Health Sciences

Author Kaveh Ardalan Pediatrics, Rheumatology