Literature DB >> 33832799

Measuring the impact of burn injury on the parent-reported health outcomes of children 1-to-5 years: Item pool development for the Preschool1-5 Life Impact Burn Recovery Evaluation (LIBRE) Profile.

Gabrielle G Grant1, Keri J S Brady2, Frederick J Stoddard3, Walter J Meyer4, Kathleen S Romanowski5, Philip H Chang6, Lynda E Painting5, Laura A Fowler7, Judith K Nelson7, Khushbu F Patel8, R Christopher Sheldrick9, Alice Carter10, Robert L Sheridan11, Mary D Slavin9, Petra Warner12, Tina L Palmieri5, Jeffrey C Schneider13, Lewis E Kazis9, Colleen M Ryan14.   

Abstract

Modern, reliable, and valid outcome measures are essential to understanding the health needs of young children with burn injuries. Burn-specific and age-appropriate legacy assessment tools exist for this population but are hindered by the limitations of existing paper-based instruments. The purpose of this study was to develop item pools comprised of questions appropriate for children aged 1-5 with burn injuries. Item development was based on a framework provided by previous work to develop the Preschool Life Impact Burn Recovery Evaluation (LIBRE) Conceptual Model. The Preschool LIBRE Conceptual Model work established four sub-domains of functioning for children with burns aged 1-5. Item development involved a systematic literature review, a qualitative item review process with clinical experts, and parent cognitive interviews. Four item pools were established: (1) communication and language development; (2) physical functioning; (3) psychological functioning and (4) social functioning for preschool-aged children with burn injuries. We selected and refined candidate items, recall periods, survey instructions, and response option choices through clinical and parental feedback during the qualitative review and cognitive interview processes. Item pools are currently being field-tested as part of the process to calibrate and validate the Preschool1-5 LIBRE Computer Adaptive Test (CAT) Profile.
Copyright © 2021 Elsevier Ltd and ISBI. All rights reserved.

Entities:  

Keywords:  Burn injury; Health outcomes metrics; Item pool development; Patient-reported outcomes measure; Pediatric burn outcomes

Mesh:

Year:  2021        PMID: 33832799      PMCID: PMC8711655          DOI: 10.1016/j.burns.2021.02.010

Source DB:  PubMed          Journal:  Burns        ISSN: 0305-4179            Impact factor:   2.744


  42 in total

1.  Content validity--establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO good research practices task force report: part 1--eliciting concepts for a new PRO instrument.

Authors:  Donald L Patrick; Laurie B Burke; Chad J Gwaltney; Nancy Kline Leidy; Mona L Martin; Elizabeth Molsen; Lena Ring
Journal:  Value Health       Date:  2011-10-13       Impact factor: 5.725

Review 2.  Development of a Conceptual Framework to Measure the Social Impact of Burns.

Authors:  Molly Marino; Marina Soley-Bori; Alan M Jette; Mary D Slavin; Colleen M Ryan; Jeffrey C Schneider; Linda Resnik; Amy Acton; Flor Amaya; Melinda Rossi; Rene Soria-Saucedo; Lewis E Kazis
Journal:  J Burn Care Res       Date:  2016 Nov/Dec       Impact factor: 1.845

3.  The development, validation, and testing of a health outcomes burn questionnaire for infants and children 5 years of age and younger: American Burn Association/Shriners Hospitals for Children.

Authors:  Lewis E Kazis; Matthew H Liang; Austin Lee; Xinhua S Ren; Charlotte B Phillips; Michelle Hinson; Catherine Calvert; Marc Cullen; Mary Beth Daugherty; Cleon W Goodwin; Marilyn Jenkins; Robert L McCauley; Walter J Meyer; Tina Palmieri; Frank Pidcock; Debra Reilly; Glenn Warden; David Wood; Ronald Tompkins
Journal:  J Burn Care Rehabil       Date:  2002 May-Jun

4.  Development of the life impact burn recovery evaluation (LIBRE) profile: assessing burn survivors' social participation.

Authors:  Lewis E Kazis; Molly Marino; Pengsheng Ni; Marina Soley Bori; Flor Amaya; Emily Dore; Colleen M Ryan; Jeff C Schneider; Vivian Shie; Amy Acton; Alan M Jette
Journal:  Qual Life Res       Date:  2017-05-10       Impact factor: 4.147

5.  An examination of the PROMIS(®) pediatric instruments to assess mobility in children with cerebral palsy.

Authors:  Anna L Kratz; Mary D Slavin; M J Mulcahey; Alan M Jette; David S Tulsky; Stephen M Haley
Journal:  Qual Life Res       Date:  2013-03-31       Impact factor: 4.147

6.  Psychometric Evaluation of the PROMIS® Pediatric Psychological and Physical Stress Experiences Measures.

Authors:  Katherine B Bevans; William Gardner; Kathleen A Pajer; Brandon Becker; Adam Carle; Carole A Tucker; Christopher B Forrest
Journal:  J Pediatr Psychol       Date:  2018-07-01

7.  The Development and Validation of the CARe Burn Scale-Adult Form: A Patient-Reported Outcome Measure (PROM) to Assess Quality of Life for Adults Living with a Burn Injury.

Authors:  Catrin Griffiths; Ella Guest; Timothy Pickles; Linda Hollén; Mariusz Grzeda; Paul White; Philippa Tollow; Diana Harcourt
Journal:  J Burn Care Res       Date:  2019-04-26       Impact factor: 1.845

8.  Developing a valid patient-reported outcome measure.

Authors:  N E Rothrock; K A Kaiser; D Cella
Journal:  Clin Pharmacol Ther       Date:  2011-10-05       Impact factor: 6.875

9.  PROMIS Pediatric Peer Relationships Scale: development of a peer relationships item bank as part of social health measurement.

Authors:  Darren A Dewalt; David Thissen; Brian D Stucky; Michelle M Langer; Esi Morgan Dewitt; Debra E Irwin; Jin-Shei Lai; Karin B Yeatts; Heather E Gross; Olivia Taylor; James W Varni
Journal:  Health Psychol       Date:  2013-06-17       Impact factor: 4.267

10.  The Development and Validity of the Adult Burn Outcome Questionnaire Short Form.

Authors:  Liang Chen; Austin F Lee; Gabriel D Shapiro; Jeremy Goverman; Nicholas Faoro; Jeffrey C Schneider; Lewis E Kazis; Colleen M Ryan
Journal:  J Burn Care Res       Date:  2018-08-17       Impact factor: 1.845

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  1 in total

1.  Physical, Psychological, and Social Outcomes in Pediatric Burn Survivors Ages 5 to 18 Years: A Systematic Review.

Authors:  Khushbu F Patel; Silvanys L Rodríguez-Mercedes; Gabrielle G Grant; Camerin A Rencken; Erin M Kinney; Amelia Austen; Carina Hou; Keri J S Brady; Jeffrey C Schneider; Lewis E Kazis; Colleen M Ryan
Journal:  J Burn Care Res       Date:  2022-03-23       Impact factor: 1.819

  1 in total

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