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Published on: January 12, 2018
Pulmonary important outcomes after extremely preterm birth: Parental perspectives
Emilie Thivierge1,2, Thuy Mai Luu1,2,3, Claude Julie Bourque2,4
1Department of Pediatrics, Université de Montréal, Montréal, Québec, Canada.
Parents of extremely preterm infants report significant pulmonary important outcomes (PIO), often impacting the entire family. These outcomes focus on functional lung disease effects, not just diagnoses like bronchopulmonary dysplasia (BPD).
Area of Science:
- Neonatal Medicine
- Pediatric Pulmonology
- Parental Health Outcomes
Background:
- Extremely preterm infants (<29 weeks' gestational age) face significant risks for pulmonary complications.
- Current research often overlooks the parental perspective on the long-term impact of these respiratory issues.
- Understanding parental concerns is crucial for comprehensive infant care and family support.
Purpose of the Study:
- To describe the pulmonary important outcomes (PIO) as reported by parents of children born extremely preterm.
- To identify the range of themes parents associate with their child's respiratory health post-NICU.
- To compare parental reporting of PIO across different subgroups of extremely preterm infants.
Main Methods:
- A prospective study involving parents of children aged 18 months to 7 years born <29 weeks' gestational age.
- Parental perspectives on pulmonary outcomes were collected over one year.
- Mixed methods analysis was used to examine the proportion of parents reporting PIO and the themes identified.
Main Results:
- 44% of parents (n=285) reported PIO, covering 24 themes related to NICU hospitalization and long-term respiratory health.
- Reported outcomes included child limitations (e.g., exercise) and family impacts (e.g., readmissions).
- Pulmonary important outcomes were more frequently mentioned in males and infants readmitted for respiratory issues; no parents mentioned oxygen use at 36 weeks or bronchopulmonary dysplasia (BPD).
Conclusions:
- Parents frequently describe pulmonary important outcomes (PIO) related to the functional impact of lung disease on their child and family.
- These PIO are often not primary outcomes in neonatal trials or captured in neonatal databases.
- There is a need to incorporate these parent-reported outcomes into clinical practice and research.
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