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Patient-reported outcomes for congenital diaphragmatic hernia: A qualitative study
Aymara Taillieu1, Jan Deprest1,2,3, Simen Vergote1,2
1Department of Development and Regeneration Cluster Woman and Child, Biomedical Sciences, KU Leuven, Leuven, Belgium.
Insights
Patient-reported outcomes (PROs) are crucial for parents facing a congenital diaphragmatic hernia (CDH) diagnosis. Understanding these outcomes aids decision-making and supports families through their challenging journey.
Area of Science:
- Pediatric Surgery
- Maternal-Fetal Medicine
- Patient-Centered Care
Background:
- Congenital diaphragmatic hernia (CDH) presents complex challenges for families.
- Prenatal diagnosis necessitates informed decision-making regarding pregnancy management and infant care.
- Parental perspectives are vital in navigating the multifaceted aspects of CDH.
Purpose of the Study:
- To identify and characterize patient-reported outcomes (PROs) for parents experiencing a prenatal diagnosis of isolated congenital diaphragmatic hernia (CDH).
- To understand the key concerns and priorities of parents throughout the CDH trajectory.
Main Methods:
- Thematic analysis of in-depth interviews with 26 parents.
- Qualitative research methodology to explore lived experiences.
Main Results:
- Eleven distinct PROs were identified across different time points of the CDH journey.
- Key outcomes included quality of life at diagnosis, survival chances and fetal therapy eligibility during pregnancy, postnatal management, and long-term impacts on family and parental well-being.
- Parents reported distress related to fetal and maternal complications and highlighted the importance of postnatal care and future infant/child health.
Conclusions:
- PROs offer valuable insights beyond medical outcomes, empowering parents in decision-making aligned with their personal circumstances.
- Findings provide clinicians with crucial information to better support parents and families facing challenging CDH-related healthcare decisions.
- Addressing parental concerns is essential for preparing families for the demanding journey associated with CDH.
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 foetal therapy were prominent outcomes with foetal 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.
