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Child- and Proxy-reported Differences in Patient-reported Outcome and Experience Measures in Pediatric Surgery:
Zanib Nafees1, Siena O'Neill2, Alexandra Dimmer1
1Faculty of Medicine and Health Sciences, McGill University, Montreal, Quebec, Canada; Harvey E. Beardmore Division of Pediatric Surgery, The Montreal Children's Hospital, McGill University Health Centre, Montreal, Quebec, Canada.
Insights
Child and parent reports on pediatric surgical patients show significant variability but few systematic differences in health outcomes. Future research should explore this variability to better integrate both perspectives in assessments.
Area of Science:
- Pediatric Surgery
- Health Outcomes Research
- Patient-Reported Measures
Background:
- Pediatric health outcomes are often assessed via proxy reports, potentially missing children's unique experiences, especially in surgical contexts.
- Children undergoing surgery have complex, evolving healthcare journeys, making accurate outcome representation challenging.
- Patient-Reported Outcome Measures (PROMs) and Patient-Reported Experience Measures (PREMs) offer direct insights but require careful interpretation in pediatric populations.
Purpose of the Study:
- To systematically review and compare child-reported versus parent-reported health status and treatment experiences in pediatric surgery.
- To evaluate the concordance between child and parent perspectives captured through PROMs and PREMs.
- To identify the prevalence and types of PROMs and PREMs used in pediatric surgical research.
Main Methods:
- A systematic literature search adhering to PRISMA guidelines was conducted across eight databases up to July 2023.
- Studies utilizing PROMs and PREMs in pediatric surgery, capturing both child and parent viewpoints, were included.
- Quality assessment was performed using the Mixed Methods Appraisal Tool (MMAT), and a meta-analysis focused on Pediatric Quality of Life Inventory (PedsQL™) outcomes.
Main Results:
- Out of 5415 screened studies, 53 met inclusion criteria, with 50 using PROMs.
- The Pediatric Quality of Life Inventory (PedsQL™) was the most common measure, appearing in 30 studies.
- A meta-analysis of 22 studies (6691 child-parent pairs) showed a pooled effect size of 0.98 (95% CI: [-0.81, 2.77]) for PedsQL™ scores, with high heterogeneity (I² = 89%).
Conclusions:
- Substantial variability exists between child and parent reports on health status and experiences in pediatric surgery.
- Minimal systematic differences were observed, suggesting that while reports differ, they do not consistently diverge in one direction.
- Further research is needed to understand the sources of variability and enhance the integration of child and parent perspectives in pediatric health assessments.
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).
