Patient-reported outcomes for congenital diaphragmatic hernia: A qualitative study.
Aymara TaillieuJan A DeprestSimen VergoteAnne DebeerFrancesca Maria RussoBeverley PowerFrank MeijerNeeltje M T H CrombagPublished in: Prenatal diagnosis (2023)
PROs are relevant in addition to hard medical outcomes, as they help parents to make decisions suiting their unique needs and personal situation. Given the knowledge inherently related to the parent's perspective, our findings provide relevant directions for clinicians to support parents and their family in facing challenging decisions in healthcare. The outcomes impacting parents are essential to prepare parents for the steep journey ahead.