Thivierge E, Tuu TM, Bourque CJ, Barrington KJ, Pearce R, Jaworski M, Janvier A. (2023). Pulmonary important outcomes after extremely preterm birth: Parental perspectives. Acta Paediatrica. 112(5):970-976
Abstract
Aim
To describe pulmonary important outcomes (PIO) reported by parents of children born extremely preterm.
Methods
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.
Results
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.
Conclusion
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.
Keywords: 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.
Ce contenu a été mis à jour le 4 octobre 2023 à 14h37.
