What Is the Level of Agreement between Family Caregivers and Their Children Living with Rheumatic Disease in Reporting Health-Related Quality of Life?
Author(s)
Ya-Ning Chan, PhD, RN1, Kaveh Ardalan, MD, MS2, Li Lin, MS1, Dandan Chen, PhD3, Laura E. Schanberg, MD2, Richard K. Vehe, MD4, Bryce B. Reeve, PhD1;
1Duke University, Center of Health Measurement, Department of Population Health Sciences, Durham, NC, USA, 2Duke University, Department of Pediatrics, Division of Pediatric Rheumatology, Durham, NC, USA, 3Massachusetts General Hospital, Department of Surgery, Boston, MA, USA, 4University of Minnesota, Department of Pediatrics, Division of Pediatric Rheumatology, Minneapolis, MN, USA
1Duke University, Center of Health Measurement, Department of Population Health Sciences, Durham, NC, USA, 2Duke University, Department of Pediatrics, Division of Pediatric Rheumatology, Durham, NC, USA, 3Massachusetts General Hospital, Department of Surgery, Boston, MA, USA, 4University of Minnesota, Department of Pediatrics, Division of Pediatric Rheumatology, Minneapolis, MN, USA
Presentation Documents
OBJECTIVES: Children living with juvenile idiopathic arthritis (JIA) and systemic lupus erythematosus (SLE) often experience lower health-related quality of life (HRQOL) than the general pediatric population due to physical and psychological impacts of their diagnoses. Although child self-report is the gold standard for understanding HRQOL in children, caregiver-proxy report may be needed when child self-report is not possible or when both child and caregiver perspectives are of interest. This study explores agreement between child self-report and caregiver-proxy report HRQOL in JIA and SLE and factors associated with the level of agreement.
METHODS: The data was from the Pediatric Patient Reported Outcomes in Chronic Diseases (PEPR) study. HRQOL was assessed at baseline, 6 months, and 12 months using the Patient-Reported Outcomes Measurement Information System® Pediatric Self-Report and Parent-Proxy measures. One-way random-effects model was performed to estimate the intraclass correlation coefficient (ICC) between each self- and proxy-report outcome, and multivariable mixed-effect models were used to identify associated factors.
RESULTS: We included 451 child-caregiver dyads for analysis. The associations of HRQOL domains were consistent over time, with moderate to strong associations (ICC=0.50—0.68) in mobility, physical activity, fatigue, pain interference, depressive symptoms, and psychological stress, and mild to moderate associations (ICC=0.34—0.42) in family relationships and anxiety. Across all domains except depression, significantly worse functioning and higher symptom burden were reported by caregiver-proxy compared with child’s self-report. Older child age predicted stronger child-caregiver physical and psychological symptom agreement while female (compared with male) children predicted stronger child-caregiver psychological symptom agreement.
CONCLUSIONS: The level of agreement between child self-report and caregiver-proxy report varies based on the HRQOL domain. While self-report continues to be the gold standard, this study shows that caregivers can provide important information, especially on observable physical aspects of health. However, differences in child-caregiver scores are common, so caregiver-proxy report should be considered complementary, not interchangeable, with self-report.
METHODS: The data was from the Pediatric Patient Reported Outcomes in Chronic Diseases (PEPR) study. HRQOL was assessed at baseline, 6 months, and 12 months using the Patient-Reported Outcomes Measurement Information System® Pediatric Self-Report and Parent-Proxy measures. One-way random-effects model was performed to estimate the intraclass correlation coefficient (ICC) between each self- and proxy-report outcome, and multivariable mixed-effect models were used to identify associated factors.
RESULTS: We included 451 child-caregiver dyads for analysis. The associations of HRQOL domains were consistent over time, with moderate to strong associations (ICC=0.50—0.68) in mobility, physical activity, fatigue, pain interference, depressive symptoms, and psychological stress, and mild to moderate associations (ICC=0.34—0.42) in family relationships and anxiety. Across all domains except depression, significantly worse functioning and higher symptom burden were reported by caregiver-proxy compared with child’s self-report. Older child age predicted stronger child-caregiver physical and psychological symptom agreement while female (compared with male) children predicted stronger child-caregiver psychological symptom agreement.
CONCLUSIONS: The level of agreement between child self-report and caregiver-proxy report varies based on the HRQOL domain. While self-report continues to be the gold standard, this study shows that caregivers can provide important information, especially on observable physical aspects of health. However, differences in child-caregiver scores are common, so caregiver-proxy report should be considered complementary, not interchangeable, with self-report.
Conference/Value in Health Info
2025-05, ISPOR 2025, Montréal, Quebec, CA
Value in Health, Volume 28, Issue S1
Code
PCR205
Topic
Patient-Centered Research
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes
Disease
SDC: Pediatrics