Work

Parent-child (dis)agreement in patient-reported outcomes in juvenile idiopathic arthritis: the role of child depression and caregiver burden

Year: 2026

Type: article

Abstract: Objectives: Patient-reported outcome measures (PROMs) are essential for capturing disease impact and supporting patient-centred care (PCC). In paediatric settings, proxy reports (proxy-PROMs [P-PROMs]) are often used alongside or instead of self-reports. This study aimed to assess the agreement between PROMs and P-PROMs, examine group-level differences, and identify factors associated with disagreement in juvenile idiopathic arthritis (JIA). Methods: ). Mean difference scores (parent minus child) for physical and psychosocial health-related quality of life (HRQOL), assessed within the JAMAR, were categorised as agreement, child-worse, or parent-worse. Multinomial regression analyses (reference category: agreement) were used to identify predictors of disagreement. Results: Agreement at the individual level was predominantly moderate. No consistent group-level differences were observed across outcomes. Higher child-reported depressive symptoms were associated with an increased likelihood of children reporting worse psychosocial and physical HRQOL, whereas higher caregiver burden was associated with a greater likelihood of parents reporting worse HRQOL. Conclusions: Child-parent agreement in JIA is moderate, underscoring the importance of integrating both perspectives in clinical assessment and personalised care. Higher levels of child depressive symptoms and caregiver burden were associated with poorer self- and proxy-reported HRQOL, respectively, and should be considered when interpreting parent-child disagreement and guiding individualised PCC.

Source: EULAR Rheumatology Open

DOI: 10.1016/j.ero.2026.100253

Authors: Michelle Dey, Lisa Pedrotti, Federica Vanoni, Tatjana Welzel, Julia Dratva, Rotraud K. Saurenmann