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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

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Abstract

Purpose

To examine agreement between pediatric burn survivor self- and caregiver proxy-report on multiple PROMIS domains and examine factors associated with differences between self- and proxy-reports.

Methods

Children 8–17 years of age 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 (ICC) 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.

Results

Two hundred and seventy four child-caregiver pairs completed the PROMIS measures. Mean child age was 13.0 (SD:3) years. Caregivers reported significantly worse scores than the child on physical function, pain, and anger (all p ≤ 0.01). 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%-9% of pairs discordant. Only higher self-report score was associated (all p < 0.05) with greater differences across all domains in regression analyses.

Conclusions

This study supports 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 report slightly worse severity of symptoms than children across all domains.

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Data availability

A complete deidentified Burn Model System dataset is freely available via written request to burndata@uw.edu. See burndata.washington.edu for additional information.

Code availability

Stata code will be shared upon reasonable request.

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Funding

This work was supported by the National Institute on Disability, Independent Living, and Rehabilitation Research (Grant Number: 90DPGE0004; PI: Amtmann, D).

Author information

Authors and Affiliations

  1. Department of Rehabilitation Medicine, University of Washington, Seattle, WA, 98195-4237, USA

    Alyssa M. Bamer, Kara McMullen & Dagmar Amtmann

  2. Department of Health Law, Policy and Management, School of Public Health, Boston University, Boston, MA, USA

    Lewis Kazis

  3. Shriners Hospitals for Childre–Boston, Boston, MA, USA

    Camerin A. Rencken

  4. Department of Surgery, University of Texas Medical Branch, Galveston, TX, USA

    Steven E. Wolf

  5. Department of Surgery, University of Washington, Seattle, WA, USA

    Barclay T. Stewart

Authors
  1. Alyssa M. Bamer
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Contributions

All authors contributed to the study conception and design. Data analyses were performed by AB, KM, and DA. The first draft of the manuscript was written by AB and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Alyssa M. Bamer.

Ethics declarations

Conflict of interest

All authors received support from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) for their work on this project: Authors AB, KM, and DA under grant #90DPGE0004, SW under grant #90DPBU0003, BS under grant #90DP0004, and LK and CR under grant #90DBPU0001. Author SW has also received NIDILRR funding for an unrelated project (Grant #90DPBU0003). Author SW is the Editor in Chief of the journal Burns and has received consultant fees from Rochal Industries and travel support from Shriners’ Hospitals for Shrine Leadership meetings.

Ethical approval

All procedures performed were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards. The study was approved by the Institutional Review Boards at all research sites. These included the University of Washington, Seattle, WA, Partners Healthcare System and Shriners Hospital for Children, Boston, MA, University of Texas Southwestern Medical Center, Dallas, TX, and the University of Texas Medical Branch, Galveston, TX.

Consent to participate

Freely given, written informed consent was obtained from all participants or their parent or legal guardian in the case of children under 18.

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Bamer, A.M., McMullen, K., Wolf, S.E. et al. 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. Qual Life Res 30, 2071–2080 (2021). https://doi.org/10.1007/s11136-021-02796-3

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