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Development of a proxy-reported pulmonary outcome scale for preterm infants with bronchopulmonary dysplasia
Sara E Massie1, Sue Tolleson-Rinehart, Darren A DeWalt
1School of Medicine, The University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
Insights
Researchers developed the Proxy-Reported Pulmonary Outcomes Scale (PRPOS) to assess bronchopulmonary dysplasia severity in preterm infants. This bedside tool supplements existing measurements for chronic lung disease in neonates.
Area of Science:
- Neonatology
- Pediatric Pulmonology
- Health Outcomes Research
Background:
- Bronchopulmonary dysplasia (BPD), or chronic lung disease, significantly impacts preterm infants.
- Current biometric measurements for BPD severity lack a comprehensive, proxy-reported bedside tool.
- There is a need for improved assessment methods to supplement existing clinical evaluations.
Purpose of the Study:
- To develop an accurate, proxy-reported bedside measurement tool for assessing bronchopulmonary dysplasia severity in preterm infants.
- To create a scale that supplements providers' current biometric measurements of chronic lung disease.
- To establish a novel assessment method for neonatal respiratory outcomes.
Main Methods:
- Adapted Patient-Reported Outcomes Measurement Information System (PROMIS) methodology.
- Utilized a modified Delphi process for item classification and selection.
- Incorporated multidisciplinary expert input and iterative refinement through focus groups and cognitive interviews.
Main Results:
- Successfully developed a prototype scale, the Proxy-Reported Pulmonary Outcomes Scale (PRPOS).
- The scale comprises 26 questions/observations for bedside assessment by nurses during routine care and feeding.
- Iterative development phases ensured comprehensive domain, item, and response option refinement.
Conclusions:
- A prototype scale for proxy-reported assessment of BPD severity was successfully created.
- The developed scale, PRPOS, can serve as a model for other pediatric proxy-reported outcome scales.
- This methodology offers a replicable approach for creating similar outcome measures in diverse pediatric populations.
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.
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