Development of a proxy-reported pulmonary outcome scale for preterm infants with bronchopulmonary dysplasia Public Deposited

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Creator
  • Tolleson-Rinehart, Sue
    • Affiliation: School of Medicine, Department of Pediatrics
    • Other Affiliation: North Carolina Translational and Clinical Sciences Institute
  • Laughon, Matthew
    • Affiliation: School of Medicine, Department of Pediatrics
  • Massie, Sara E
    • Affiliation: School of Medicine, Department of Medicine
  • Price, Wayne A
    • Affiliation: School of Medicine, Department of Pediatrics
  • Powell, Leslie M
    • Affiliation: School of Medicine
    • Other Affiliation: North Carolina Translational and Clinical Sciences Institute
  • DeWalt, Darren A
    • Affiliation: School of Medicine, Department of Medicine, Division of General Medicine and Clinical Epidemiology, Cecil G. Sheps Center for Health Services Research
Abstract
  • Abstract Background To develop an accurate, proxy-reported bedside measurement tool for assessment of the severity of bronchopulmonary dysplasia (also called chronic lung disease) in preterm infants to supplement providers' current biometric measurements of the disease. Methods We adapted Patient-Reported Outcomes Measurement Information System (PROMIS) methodology to develop the Proxy-Reported Pulmonary Outcomes Scale (PRPOS). A multidisciplinary group of registered nurses, nurse practitioners, neonatologists, developmental specialists, and feeding specialists at five academic medical centers participated in the PRPOS development, which included five phases: (1) identification of domains, items, and responses; (2) item classification and selection using a modified Delphi process; (3) focus group exploration of items and response options; (4) cognitive interviews on a preliminary scale; and (5) final revision before field testing. Results Each phase of the process helped us to identify, classify, review, and revise possible domains, questions, and response options. The final items for field testing include 26 questions or observations that a nurse assesses before, during, and after routine care time and feeding. Conclusions We successfully created a prototype scale using modified PROMIS methodology. This process can serve as a model for the development of proxy-reported outcomes scales in other pediatric populations.
Date of publication
Identifier
  • doi:10.1186/1477-7525-9-55
  • 21791099
Resource type
  • Article
Rights statement
  • In Copyright
Rights holder
  • Sara E Massie et al.; licensee BioMed Central Ltd.
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Journal title
  • Health and Quality of Life Outcomes
Journal volume
  • 9
Journal issue
  • 1
Page start
  • 55
Language
  • English
Is the article or chapter peer-reviewed?
  • Yes
ISSN
  • 1477-7525
Bibliographic citation
  • Health and Quality of Life Outcomes. 2011 Jul 26;9(1):55
Access
  • Open Access
Publisher
  • BioMed Central Ltd
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