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).
Background: Interpersonal injury disproportionately impacts marginalized communities. Crime Victim Compensation (CVC) was developed in Canada and the United States to help individuals and their families following violent injury. In Illinois, the CVC program offers up to $27,000 per claim to assist with mental health, relocation, and burial expenses. Pediatric claimants are inherently vulnerable and may need assistance filing claims. We aimed to study disparities in CVC claim outcomes for Illinois children.
Methods: We filed a Freedom of Information Act claim with the Office of the Illinois Secretary of State from 2012 to 2021. We used descriptive statistics to analyze CVC claim requests in children ages 17 and under.
Results: On average, 3677 claims were filed annually, 13.2 % for youths (Table 1). The most common crimes for which compensation was requested were assault/battery (47.1 %) and homicide (20.8 %). 39.7 % of claims were awarded, 53.6 % were denied, 3.4 % remained open, and 3.3 % were closed without payment. Claims for homicides were the most likely to be awarded, at 69.4 % overall and 70.7 % of youth claimants. The median award following homicide was $7500 (IQR 5460-7500) and similar in children (P = 0.11). The median award following assault/battery was $1564 (IQR 638-4179), although less for children $900 (250-2749, P < 0.0001). Children were less likely to be awarded after filing a claim (P < 0.0001) and were awarded less money for successful claims (P < 0.0001).
Conclusion: CVC was created to support injured persons, however, most claims in Illinois are rejected with children being even less likely to benefit. Further action is needed to increase the proportion of successful claims.
Level of evidence: IV.
Background: Wait times for children's hospital-based surgical services are at unprecedented levels. Opportunities to increase most children's hospital-based service capacity are sparse, and community-based services are a potential patient-centered alternative. The aim of this study was to understand the current state of pediatric surgical outreach in Canada as an option to address these challenges.
Methods: An electronic survey was sent to all (n = 18) Canadian children's hospital surgical leaders inquiring about "outreach services" defined as inpatient/outpatient services provided by pediatric surgeons outside of children's hospitals. Descriptive analysis of outreach included facility type/location (by postal code), nature and frequency of service, and participation of other specialties.
Results: 18 survey respondents (100 %) reported that pediatric surgical outreach services were available in 7 out of 10 provinces, but only 8/18 (44 %) of Canadian children's hospitals. Services include: i) inpatient coverage at 2 sites in 2 provinces; ii) outpatient surgery at 6 sites in 3 provinces (median distance 69 km, range 6-1881 km from home children's hospital); and iii) outpatient ambulatory clinics at 19 sites in 4 provinces (median distance 18 km, range 4-1448 km from home children's hospital). Median frequencies of outreach surgical slates and clinics were 1 per week and 1 per month, respectively.
Conclusion: Less than half of Canadian children's hospitals have developed outreach programs as a strategy to increase capacity for children's surgical services. To promote improved surgical care for all Canadian children, efforts targeting expansion of outreach capacity could increase access for geographically remote children.
Type of study: Cross sectional Retrospective Survey.
Level of evidence: Level IV.