Open Access Research

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

Sara E Massie1, Sue Tolleson-Rinehart23, Darren A DeWalt4, Matthew M Laughon2, Leslie M Powell3 and Wayne A Price2*

Author Affiliations

1 Medicine Administration, School of Medicine, The University of North Carolina at Chapel Hill, Chapel Hill, NC, USA

2 Department of Pediatrics, School of Medicine, The University of North Carolina at Chapel Hill, Chapel Hill, NC, USA

3 North Carolina Translational and Clinical Sciences Institute, The University of North Carolina at Chapel Hill, Chapel Hill, NC, USA

4 Cecil G. Sheps Center for Health Services Research and Division of General Medicine and Clinical Epidemiology, School of Medicine, The University of North Carolina at Chapel Hill, Chapel Hill, NC, USA

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Health and Quality of Life Outcomes 2011, 9:55  doi:10.1186/1477-7525-9-55

Published: 26 July 2011

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.