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

J Rheumatol. 2025 Nov 1:jrheum.2025-0598. doi: 10.3899/jrheum.2025-0598. Online ahead of print.

ABSTRACT

OBJECTIVE: 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 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 months, and 12 months. Four hundred fifty-one children (8-17 years) diagnosed with JIA or cSLE and their caregivers completed the PROMIS Pediatric Self-Report and Parent-Proxy measures, respectively. A one-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), while 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 (0.25-0.75 points) than younger children; female children had higher congruence with their caregivers on psychological symptoms (-2.02 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.

PMID:41176344 | DOI:10.3899/jrheum.2025-0598