Research: Patient-reported outcomes for congenital diaphragmatic hernia: A qualitative study

Prenat Diagn

. 2023 Jan 4.

 doi: 10.1002/pd.6303. Online ahead of print.

Patient-reported outcomes for congenital diaphragmatic hernia: A qualitative study

Aymara Taillieu 1Jan Deprest 1 2 3Simen Vergote 1 2Anne Debeer 1 4Francesca Maria Russo 1 2Beverley Power 5Frank Meijer 6Neeltje Crombag 1 7

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Objective: To identify Patient-reported outcomes (PROs) for parents with a lived experience of a prenatal diagnosis of isolated congenital diaphragmatic hernia (CDH).

Method: Thematic analysis of in-depth interview transcripts.

Results: Interviews (n= 26) identified 11 PROs, for given time points throughout the CDH trajectory. At the time of diagnosis acceptable quality of life was selected as relevant PRO to decide whether to continue or terminate the pregnancy. During pregnancy, (neonatal) survival chances and the eligibility for fetal therapy were prominent outcomes, with fetal and maternal complications adding distress. After birth, postnatal management options became the next milestone. When survival was deemed likely, post-hospital discharge complications, and future care for infant and child became important. In retrospect, impact on family, bonding, parental mental health, and parental satisfaction with care were reported as relevant outcomes.

Conclusion: 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. This article is protected by copyright. All rights reserved.

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