Pulmonary important outcomes after extremely preterm birth: Parental perspectives.
bronchopulmonary dysplasia
chronic lung disease
extreme prematurity
home oxygen
intubation
neonatal intensive care
neonatal research
parent important outcomes
parental perspectives
prematurity
pulmonary health
pulmonary outcomes
rehospitalisation
Journal
Acta paediatrica (Oslo, Norway : 1992)
ISSN: 1651-2227
Titre abrégé: Acta Paediatr
Pays: Norway
ID NLM: 9205968
Informations de publication
Date de publication:
05 2023
05 2023
Historique:
revised:
20
01
2023
received:
09
12
2022
accepted:
21
02
2023
medline:
11
4
2023
pubmed:
24
2
2023
entrez:
23
2
2023
Statut:
ppublish
Résumé
To describe pulmonary important outcomes (PIO) reported by parents of children born extremely preterm. Over 1-year, all parents of children aged 18 months-7-years born <29 weeks' GA were asked regarding their perspectives. The proportion of parents who described PIO and the themes they invoked were examined. Results were analysed using mixed methods. Among parental responses (n = 285, 98% participation rate), 44% spoke about PIO, invoking 24 themes pertaining to NICU hospitalisation and/or long-term respiratory health. Some themes had an impact primarily on the child (e.g. exercise limitation), while the majority had an impact on the whole family (e.g. hospital readmissions). None mentioned oxygen at 36 weeks nor bronchopulmonary dysplasia (BPD). The proportion of responses invoking PIO were statistically similar between parents of children with and without BPD, born before or after 25 weeks or with birthweight < or ≥750 g. PIO were more likely to be mentioned in males and among those readmitted for respiratory problems. Parents describe many PIO, most related to the functional impact of lung disease on their child (and family), rather than the diagnosis of BPD itself. Most of these PIO are not primary outcomes in large neonatal trials nor collected in neonatal databases.
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
970-976Subventions
Organisme : CIHR
Pays : Canada
Organisme : Fonds de Recherche du Québec - Santé
Organisme : CIHR
Pays : Canada
Informations de copyright
© 2023 Foundation Acta Paediatrica. Published by John Wiley & Sons Ltd.
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