Child- and Proxy-reported Differences in Patient-reported Outcome and Experience Measures in Pediatric Surgery: Systematic Review and Meta-analysis

Abstract

Purpose

Pediatric health outcomes are often assessed using proxy reports, which may not fully capture children's experiences. Children with surgical conditions face unique, changing healthcare journeys, making accurate representation challenging. This review compares child-reported health status and treatment experiences from Patient-Reported Outcome Measures (PROMs) and Patient-Reported Experience Measures (PREMs) with parent reports.

Methods

A systematic search, designed by a librarian and adhering to PRISMA guidelines, was conducted across eight databases up to July 2023, targeting studies using PROMs and PREMs in pediatric surgery to capture both child and parent perspectives. Two reviewers independently screened abstracts, with conflicts resolved by senior authors. The Mixed Methods Appraisal Tool (MMAT) was used for quality assessment. A meta-analysis was also performed on Pediatric Quality of Life Inventory (PedsQL™) outcomes.

Results

Of 5415 screened studies, 53 met inclusion criteria: 50 used PROMs, two used PREMs, and one used both. PedsQL™ appeared in 30 studies, with 16 other quality of life measures used less frequently. Twenty-two studies with PedsQL™ data from 6691 child-parent pairs were included in the meta-analysis. The pooled effect size between child- and parent-reported PedsQL™ scores was 0.98 (95 % CI: [-0.81, 2.77]), with high heterogeneity (I² = 89 %).

Conclusion

This review revealed substantial variability but minimal systematic differences between child and parent reports, highlighting the need for future research to understand this variability and improve integration of child and parent perspectives in pediatric health assessments.

Level of evidence

I, Systematic Review or meta-analysis of RCTs (randomized control trials).