Congruence Between Child Self-Reported and Caregiver-Proxy–Reported Health-Related Quality of Life in Children With Juvenile Idiopathic Arthritis and Systemic Lupus Erythematosus
Authors' conclusion
Caregivers provide complementary information on the physical aspects of HRQOL, with a tendency to estimate worse symptoms and decreased functioning.
Study context
- Population
- Children (8–17 years) diagnosed with juvenile idiopathic arthritis (JIA) or cSLE and their caregivers87.1% JIA
- Participants
- 451 children
- Exposure
- Child self-reported vs caregiver-proxy-reported health-related quality of life (HRQOL)
- Outcome
- Congruence between child self-reported and caregiver-proxy-reported HRQOL (ICC, 1-way random-effects model)
- Follow-up
- Baseline, 6, and 12 months
Methodological detailsobservational, longitudinal, Cohort mean age 13.8 years; 71.4% female, HRQOL assessed at baseline, 6 and 12 months; data from a cohort study conducted to validate Patient-Reported Outcomes Measurement Information System (PROMIS) measures
- Observational
- Longitudinal
- Cohort mean age 13.8 years; 71.4% female
- HRQOL assessed at baseline, 6 and 12 months; data from a cohort study conducted to validate PROMIS measures
Main finding
As reported in the abstract
Child–caregiver congruence across HRQOL domains (ICC)
Mobility, physical activity, fatigue, pain interference, depressive symptoms and psychological stress: moderate associations (intraclass correlation coefficient (ICC))
0.50-0.68
Family relationships and anxiety: weak associations (ICC)
0.34-0.42
Observational data: associations, not effects.
Further findings
Factors associated with congruence (multivariable mixed-effect models)
- Older vs younger children: higher congruence on symptom domains (points)
- 0.25 to 0.75
- Female vs male children: higher congruence on psychological symptoms (points)
- −2.20 to −1.98
Original publication
Congruence Between Child Self-Reported and Caregiver-Proxy–Reported Health-Related Quality of Life in Children With Juvenile Idiopathic Arthritis and Systemic Lupus Erythematosus. J Rheumatol. Published 1 November 2025. doi:10.
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