Abstract
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.
