Literature DB >> 33638744

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.

Alyssa M Bamer1, Kara McMullen2, Steven E Wolf3, Barclay T Stewart4, Lewis Kazis5, Camerin A Rencken6, Dagmar Amtmann2.   

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.

Entities:  

Keywords:  Burn Model System; PROMIS; Patient reported outcome measures; Proxy-report

Mesh:

Year:  2021        PMID: 33638744      PMCID: PMC9128338          DOI: 10.1007/s11136-021-02796-3

Source DB:  PubMed          Journal:  Qual Life Res        ISSN: 0962-9343            Impact factor:   3.440


  37 in total

1.  Visual analogue scale: evaluation of the instrument for the assessment of pruritus.

Authors:  Adam Reich; Monika Heisig; Ngoc Quan Phan; Kenichi Taneda; Kenji Takamori; Satoshi Takeuchi; Masutaka Furue; Christine Blome; Matthias Augustin; Sonja Ständer; Jacek C Szepietowski
Journal:  Acta Derm Venereol       Date:  2012-09       Impact factor: 4.437

2.  The National Institute on Disability and Rehabilitation Research burn model system database: a tool for the multicenter study of the outcome of burn injury.

Authors:  Matthew B Klein; Dennis L Lezotte; James A Fauerbach; David N Herndon; Karen J Kowalske; Gretchen J Carrougher; Barbara J deLateur; Radha Holavanahalli; Peter C Esselman; Theresa B San Agustin; Loren H Engrav
Journal:  J Burn Care Res       Date:  2007 Jan-Feb       Impact factor: 1.845

3.  The measurement of observer agreement for categorical data.

Authors:  J R Landis; G G Koch
Journal:  Biometrics       Date:  1977-03       Impact factor: 2.571

4.  Sampling plan and patient characteristics of the PROMIS pediatrics large-scale survey.

Authors:  Debra E Irwin; Brian D Stucky; David Thissen; Esi Morgan Dewitt; Jin Shei Lai; Karin Yeatts; James W Varni; Darren A DeWalt
Journal:  Qual Life Res       Date:  2010-03-05       Impact factor: 4.147

5.  Assessment of health-related quality of life in children with cancer: consistency and agreement between parent and child reports.

Authors:  Kathryn M W Russell; Melissa Hudson; Alanna Long; Sean Phipps
Journal:  Cancer       Date:  2006-05-15       Impact factor: 6.860

6.  The construction and implementation of a novel postburn pruritus scale for infants and children aged five years or less: introducing the Toronto Pediatric Itch Scale.

Authors:  Tobias Everett; Kathryn Parker; Joel Fish; Carolyne Pehora; Diandra Budd; Charis Kelly; Mark Crawford; Jason Hayes
Journal:  J Burn Care Res       Date:  2015 Jan-Feb       Impact factor: 1.845

7.  The National Institute on Disability, Independent Living, and Rehabilitation Research Burn Model System: Twenty Years of Contributions to Clinical Service and Research.

Authors:  Jeremy Goverman; Katie Mathews; Radha K Holavanahalli; Andrew Vardanian; David N Herndon; Walter J Meyer; Karen Kowalske; Jim Fauerbach; Nicole S Gibran; Gretchen J Carrougher; Dagmar Amtmann; Jeffrey C Schneider; Colleen M Ryan
Journal:  J Burn Care Res       Date:  2017 Jan/Feb       Impact factor: 1.819

8.  Pain and itch outcome trajectories differ among European American and African American survivors of major thermal burn injury.

Authors:  Matthew C Mauck; Jennifer Smith; Jeffrey W Shupp; Mark A Weaver; Andrea Liu; Andrey V Bortsov; Bilal Lateef; Samuel W Jones; Felicia Williams; James Hwang; Rachel Karlnoski; David J Smith; Bruce A Cairns; Samuel A McLean
Journal:  Pain       Date:  2017-11       Impact factor: 7.926

9.  Overview of the Spinal Cord Injury--Quality of Life (SCI-QOL) measurement system.

Authors:  David S Tulsky; Pamela A Kisala; David Victorson; Denise G Tate; Allen W Heinemann; Susan Charlifue; Steve C Kirshblum; Denise Fyffe; Richard Gershon; Ann M Spungen; Charles H Bombardier; Trevor A Dyson-Hudson; Dagmar Amtmann; Claire Z Kalpakjian; Seung W Choi; Alan M Jette; Martin Forchheimer; David Cella
Journal:  J Spinal Cord Med       Date:  2015-05       Impact factor: 1.985

10.  Race and Melanocortin 1 Receptor Polymorphism R163Q Are Associated with Post-Burn Hypertrophic Scarring: A Prospective Cohort Study.

Authors:  Ravi F Sood; Anne M Hocking; Lara A Muffley; Maricar Ga; Shari Honari; Alexander P Reiner; Ali Rowhani-Rahbar; Nicole S Gibran
Journal:  J Invest Dermatol       Date:  2015-06-01       Impact factor: 8.551

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  2 in total

1.  Strength of association between body mass index and physical function scores in paediatric burn patients: A National Institute on Disability, Independent Living, and Rehabilitation Research Burn Model System study.

Authors:  Victoria G Rontoyanni; Andrzej Kudlicki; Alen Palackic; Nicole Gibran; Barclay Stewart; Jeffrey C Schneider; Colleen M Ryan; Andrew J Murton; Steven E Wolf; Karen Kowalske; Oscar E Suman
Journal:  Burns       Date:  2022-03-11       Impact factor: 2.609

2.  Adverse Childhood Experiences and Patient-Reported Outcome Measures in Critically Ill Children.

Authors:  Anna Rodenbough; Cydney Opolka; Tingyu Wang; Scott Gillespie; Megan Ververis; Anne M Fitzpatrick; Jocelyn R Grunwell
Journal:  Front Pediatr       Date:  2022-07-13       Impact factor: 3.569

  2 in total

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