Parent-child (dis)agreement in patient-reported outcomes in juvenile idiopathic arthritis: the role of child depression and caregiver burden.
7 affiliations
- 1Department of Health, Institute of Public Health, Zurich University of Applied Sciences (ZHAW), Winterthur, Switzerland.
- 2Institute of Pediatrics of Southern Switzerland, Ente Ospedaliero Cantonale, Bellinzona, Switzerland.
- 3Faculty of Biomedical Sciences, Università della Svizzera Italiana, Lugano, Switzerland.
- 4Pediatric Rheumatology, University Children's Hospital Basel (UKBB), University of Basel, Switzerland.
- 5Pediatric Research Center, University Children's Hospital Basel (UKBB), University of Basel, Switzerland.
- 6Medical Faculty, University of Basel, Basel, Switzerland.
- 7Cantonal Hospital Winterthur, Center for Pediatrics, Switzerland.
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
Data were drawn from a Swiss multicentre cross-sectional study. Eighty-eight children with JIA aged 10 to 18 years and their parents completed self- and proxy-reported questionnaires. Agreement at the individual level was assessed using intraclass correlation coefficients for Juvenile Arthritis Multidimensional Assessment Report (JAMAR) and Patient-Reported Outcomes Measurement Information System outcomes. Group-level differences were examined using paired t tests or Wilcoxon signed-rank tests with effect sizes (Cohen's d or r). 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.
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BibTeX
@article{dey2026parentchild,
title = {{Parent-child (dis)agreement in patient-reported outcomes in juvenile idiopathic arthritis: the role of child depression and caregiver burden.}},
author = {Michelle Dey and Lisa Pedrotti and Federica Vanoni and Tatjana Welzel and Julia Dratva and Rotraud K Saurenmann and PAVE consortium1},
journal = {EULAR rheumatology open},
year = {2026},
month = sep,
doi = {10.1016/j.ero.2026.100253},
url = {https://europepmc.org/article/MED/42926791},
note = {CC BY},
}
RIS
TY - JOUR
TI - Parent-child (dis)agreement in patient-reported outcomes in juvenile idiopathic arthritis: the role of child depression and caregiver burden.
AU - Michelle Dey
AU - Lisa Pedrotti
AU - Federica Vanoni
AU - Tatjana Welzel
AU - Julia Dratva
AU - Rotraud K Saurenmann
AU - PAVE consortium1
PY - 2026
DA - 2026/09/22
JO - EULAR rheumatology open
DO - 10.1016/j.ero.2026.100253
UR - https://europepmc.org/article/MED/42926791
AB - 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 Data were drawn from a Swiss multicentre cross-sectional study. Eighty-eight children with JIA aged 10 to 18 years and their parents completed self- and proxy-reported questionnaires. Agreement at the individual level was assessed using intraclass correlation coefficients for Juvenile Arthritis Multidimensional Assessment Report (JAMAR) and Patient-Reported Outcomes Measurement Information System outcomes. Group-level differences were examined using paired t tests or Wilcoxon signed-rank tests with effect sizes (Cohen's d or r). 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.
SN - 3050-7081
ER -