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Tytuł:
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Measuring the impact of burn injury on the parent-reported health outcomes of children 1-to-5 years: Item pool development for the Preschool 1-5 Life Impact Burn Recovery Evaluation (LIBRE) Profile.
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Autorzy:
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Grant GG; Shriners Hospitals for Children - Boston, Boston, MA, United States; Department of Surgery, Massachusetts General Hospital, Boston, MA, United States; University of North Carolina at Chapel Hill, School of Nursing, Hillman Scholars in Nursing Innovation, Chapel Hill, NC, United States.
Brady KJS; Shriners Hospitals for Children - Boston, Boston, MA, United States; Department of Surgery, Massachusetts General Hospital, Boston, MA, United States; Department of Health Law, Policy, and Management, Boston University School of Public Health, Boston, MA, United States.
Stoddard FJ; Shriners Hospitals for Children - Boston, Boston, MA, United States; Department of Psychiatry, Massachusetts General Hospital, Boston, MA, United States; Harvard Medical School, Boston, MA, United States.
Meyer WJ; Department of Psychiatry and Behavioral Sciences, University of Texas Medical Branch, Galveston, TX, United States; Shriners Hospitals for Children - Galveston, Galveston, TX, United States.
Romanowski KS; Shriners Hospital for Children - Northern California, Sacramento, CA, United States; University of California Davis School of Medicine, Department of Surgery, Division of Burn Surgery, Sacramento, CA, United States.
Chang PH; Weill Cornell Medicine, New York, NY, United States.
Painting LE; Shriners Hospital for Children - Northern California, Sacramento, CA, United States; University of California Davis School of Medicine, Department of Surgery, Division of Burn Surgery, Sacramento, CA, United States.
Fowler LA; Shriners Hospital for Children - Cincinnati, Cincinnati, OH, United States.
Nelson JK; Shriners Hospital for Children - Cincinnati, Cincinnati, OH, United States.
Patel KF; Shriners Hospitals for Children - Boston, Boston, MA, United States; Department of Surgery, Massachusetts General Hospital, Boston, MA, United States.
Sheldrick RC; Department of Health Law, Policy, and Management, Boston University School of Public Health, Boston, MA, United States.
Carter A; Department of Psychology, University of Massachusetts - Boston, Boston, MA, United States.
Sheridan RL; Shriners Hospitals for Children - Boston, Boston, MA, United States; Department of Surgery, Massachusetts General Hospital, Boston, MA, United States; Harvard Medical School, Boston, MA, United States.
Slavin MD; Department of Health Law, Policy, and Management, Boston University School of Public Health, Boston, MA, United States.
Warner P; Shriners Hospital for Children - Cincinnati, Cincinnati, OH, United States; Department of Surgery, University of Cincinnati, Cincinnati, OH, United States.
Palmieri TL; Shriners Hospital for Children - Northern California, Sacramento, CA, United States; University of California Davis School of Medicine, Department of Surgery, Division of Burn Surgery, Sacramento, CA, United States.
Schneider JC; Shriners Hospitals for Children - Boston, Boston, MA, United States; Department of Physical Medicine and Rehabilitation, Spaulding Rehabilitation Hospital, Boston, MA, United States; Spaulding Research Institute, Boston, MA, United States.
Kazis LE; Department of Health Law, Policy, and Management, Boston University School of Public Health, Boston, MA, United States.
Ryan CM; Shriners Hospitals for Children - Boston, Boston, MA, United States; Department of Surgery, Massachusetts General Hospital, Boston, MA, United States; Harvard Medical School, Boston, MA, United States. Electronic address: .
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Źródło:
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Burns : journal of the International Society for Burn Injuries [Burns] 2021 Nov; Vol. 47 (7), pp. 1511-1524. Date of Electronic Publication: 2021 Feb 25.
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Typ publikacji:
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Journal Article; Research Support, Non-U.S. Gov't; Research Support, U.S. Gov't, Non-P.H.S.; Systematic Review
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Język:
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English
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Imprint Name(s):
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Publication: Amsterdam : Elsevier
Original Publication: [Guildford, Surrey, UK] : Butterworths, [c1989-
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MeSH Terms:
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Burns*
Outcome Assessment, Health Care*
Parents*
Child Development ; Child, Preschool ; Humans ; Infant ; Quality of Life ; Surveys and Questionnaires ; Survivors
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References:
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Grant Information:
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90DPBU0001 United States ACL ACL HHS
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Contributed Indexing:
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Keywords: Burn injury; Health outcomes metrics; Item pool development; Patient-reported outcomes measure; Pediatric burn outcomes
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Entry Date(s):
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Date Created: 20210409 Date Completed: 20211221 Latest Revision: 20231108
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Update Code:
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20240104
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PubMed Central ID:
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PMC8711655
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DOI:
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10.1016/j.burns.2021.02.010
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PMID:
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33832799
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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 Preschool 1-5 LIBRE Computer Adaptive Test (CAT) Profile.
(Copyright © 2021 Elsevier Ltd and ISBI. All rights reserved.)
