Acta Paediatr. 2023 Feb 23. doi: 10.1111/apa.16723. Online ahead of print.
ABSTRACT
AIM: To describe pulmonary important outcomes (PIO) reported by parents of children born extremely preterm.
METHODS: Over one-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 analyzed using mixed methods.
RESULTS: Among parental responses (n=285, 98% participation rate), 44% spoke about PIO, invoking 24 themes pertaining to NICU hospitalization and/or long-term respiratory health. Some themes had an impact primarily on the child (eg: exercise limitation), while the majority had an impact on the whole family (eg: 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 ≥750g. 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 then the diagnosis of BPD itself. Most of these PIO are not primary outcomes in large neonatal trials, nor collected in neonatal databases.
PMID:36815277 | DOI:10.1111/apa.16723