PARENT-CHILD AGREEMENT IN PEDIATRIC HRQOL MEASURED BY PEDSQL: DIFFERENCES BY DISEASE CHRONICITY AND CONTEXT
Author(s)
Marcelo Alves Favaro, PhD1, Stanimir Kostadinov Kambarev, PhD2.
1Mapi Research Trust, Lyon, France, 2ICON Clinical Research LLC, Sofia, Bulgaria.
1Mapi Research Trust, Lyon, France, 2ICON Clinical Research LLC, Sofia, Bulgaria.
OBJECTIVES: To evaluate parent-child agreement in pediatric health-related quality of life (HRQoL) using the Pediatric Quality of Life Inventory (PedsQL), and to explore whether differences in agreement are associated with disease chronicity (acute versus chronic conditions) and contextual factors such as HRQoL domains and symptom observability.
METHODS: A targeted literature review was conducted to identify evidence on agreement between child self-reported and parent proxy-reported HRQoL using the PedsQL, as well as factors influencing levels of agreement. Searches were performed in MEDLINE using predefined keywords. Quantitative studies in pediatric populations reporting agreement metrics were included. Data were extracted using a structured approach, and agreement outcomes were summarized descriptively and categorized according to standard intraclass correlation coefficient thresholds. Results were stratified by therapeutic indication and grouped by disease chronicity (chronic vs acute/episodic conditions). Qualitative studies were also reviewed to support interpretation and identify factors influencing agreement, including symptom observability, parental monitoring, and differences in perspective.
RESULTS: Agreement between child self-reports and parent-proxy reports varied substantially across therapeutic areas and contexts, ranging from poor to excellent. Poor to moderate agreement was most reported, although higher agreement was observed in specific conditions. Agreement tended to be lower for subjective domains, and higher for more observable domains. Chronic conditions demonstrated more consistent and, in some cases, higher agreement compared to acute or episodic conditions, which showed greater variability and more frequent low agreement. Parents generally reported lower HRQoL than children, particularly in subjective domains.
CONCLUSIONS: Parent-child agreement in pediatric HRQoL varies considerably by context. Higher agreement in chronic conditions may reflect greater parental familiarity and monitoring, whereas lower agreement in acute settings and subjective domains underscores limitations of proxy reporting. Parent and child reports should be considered complementary to ensure comprehensive assessment.
METHODS: A targeted literature review was conducted to identify evidence on agreement between child self-reported and parent proxy-reported HRQoL using the PedsQL, as well as factors influencing levels of agreement. Searches were performed in MEDLINE using predefined keywords. Quantitative studies in pediatric populations reporting agreement metrics were included. Data were extracted using a structured approach, and agreement outcomes were summarized descriptively and categorized according to standard intraclass correlation coefficient thresholds. Results were stratified by therapeutic indication and grouped by disease chronicity (chronic vs acute/episodic conditions). Qualitative studies were also reviewed to support interpretation and identify factors influencing agreement, including symptom observability, parental monitoring, and differences in perspective.
RESULTS: Agreement between child self-reports and parent-proxy reports varied substantially across therapeutic areas and contexts, ranging from poor to excellent. Poor to moderate agreement was most reported, although higher agreement was observed in specific conditions. Agreement tended to be lower for subjective domains, and higher for more observable domains. Chronic conditions demonstrated more consistent and, in some cases, higher agreement compared to acute or episodic conditions, which showed greater variability and more frequent low agreement. Parents generally reported lower HRQoL than children, particularly in subjective domains.
CONCLUSIONS: Parent-child agreement in pediatric HRQoL varies considerably by context. Higher agreement in chronic conditions may reflect greater parental familiarity and monitoring, whereas lower agreement in acute settings and subjective domains underscores limitations of proxy reporting. Parent and child reports should be considered complementary to ensure comprehensive assessment.
Conference/Value in Health Info
2026-11, ISPOR Europe 2026, Vienna, Austria
Value in Health, Volume 29, Issue 12S
Code
PCR172
Topic
Clinical Outcomes, Patient-Centered Research
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes