Agreement between proxy‑ and self‑report scores on PROMIS health‑related quality of life domains in pediatric burn survivors: A national institute on disability, independent living, and rehabilitation research burn model system study

Model System:

Burn

Reference Type:

Journal article

Accession No.:

J85990

Journal:

Quality of Life Research

Year, Volume, Issue, Page(s):

2021 , , ,

Publication Website:

Abstract:

Study examined agreement between pediatric burn survivor self- and caregiver proxy-report on multiple Patient Reported Outcomes Measurement Information System (PROMIS) domains and identified factors associated with differences between self- and proxy-reports. Two hundred seventy-four children and their caregivers completed PROMIS measures (physical function, depression, peer relationships, pain interference, and anger) between 6 months and 15 years after injury. Self- and proxy-report scores were compared using Wilcoxon sign rank test, Cohen’s effect size, and intraclass correlation coefficients (ICCs) and by agreement across severity of symptoms based on recommended cutoffs. Ordinary least squares regression analyses examined child- (self-report score, age, gender, and ethnicity) and proxy-related (relationship to child) factors associated with score differences. Mean child age was 13.0 years. Caregivers reported significantly worse scores than the child on physical function, pain, and anger. The effect sizes were small across all domains except physical function. Similarly, ICCs were all of moderate agreement. The percentage of dyads in agreement by severity groups was high, with only 5 to 9 percent of pairs discordant. Only higher self-report score was associated with greater differences across all domains in regression analyses. Findings support the use of pediatric proxy PROMIS depression, physical function, peer relationships, pain interference, and anger scales in pediatric burn patients. Although agreement was moderate to good, assessing proxy-report alone as a surrogate should only be considered when self-report is not possible or practical. Caregivers typically reported slightly worse severity of symptoms than children across all domains.

Author(s):