First name
Elizabeth
Last name
Fiest

Title

Ranking Future Outcomes Most Important to Parents of Children with Bronchopulmonary Dysplasia.

Year of Publication

2023

Number of Pages

113455

Date Published

05/2023

ISSN Number

1097-6833

Abstract

OBJECTIVE: To assess which potential future outcomes are most important to parents of children with bronchopulmonary dysplasia (BPD), a disease that affects future respiratory, medical, and developmental outcomes for children born preterm.

STUDY DESIGN: We recruited parents from two children's hospitals' neonatal follow-up clinics and elicited their importance rating for 20 different potential future outcomes associated with BPD. These outcomes were identified and selected through a literature review and discussions with panels of parents and clinician stakeholders, via a discrete choice experiment.

RESULTS: One hundred and five parents participated. Overall, parents ranked "Will my child be more vulnerable to other problems because of having lung disease?" as the most important outcome, with other respiratory health related outcomes also highly ranked. Outcomes related to child development and effects on the family were among the lowest ranked. Individually, parents rated outcomes differently, resulting in a broad distribution of importance scores for many of the outcomes.

CONCLUSIONS: The overall rankings suggest that parents prioritize future outcomes related to physical health and safety. Notably, for guiding research, some top-rated outcomes are not traditionally measured in outcome studies. For guiding individual counseling, the broad distribution of importance scores for many outcomes highlights the extent to which parents differ in their prioritization of outcomes.

DOI

10.1016/j.jpeds.2023.113455

Alternate Title

J Pediatr

PMID

37172804
Featured Publication
No

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