Early screening of cerebral palsy in high-risk infants after neonatal intensive care hospitalisation, comparison between premature and full-term births: parental stress and care pathway at corrected age of 4 months

Background The implementation in clinical practice of the recommendations of Novak et al. (2017) concerning the early detection of cerebral palsy (CP) remains little studied. It is essential to offer an appropriate early care pathway. We aimed to compare parental stress in families of very preterm (VP) infants and infants who had suffered from neonatal encephalopathy (NE), 4 months after their discharge from the neonatal intensive care unit. We investigated healthcare consumption in a region of the French healthcare system (Burgundy), parental satisfaction and the neurodevelopmental outcomes of high-risk infants. Method A cross-sectional study conducted in 47 families of children at high risk of CP, divided into two groups: very preterm (VP) (n=25) or NE (n=22), recruited at the Dijon University Hospital (CHU). Parental stress was assessed at 4 months corrected age using the PSI-SF index, parental satisfaction and healthcare consumption were measured with Likert scale questionnaires, and the neurodevelopmental outcomes of infants were assessed according to the recommendations. Results The level of parental stress was high and comparable between groups (median PSI: 143/180). Approximately one quarter of the children (n= 10) were at risk of CP having a HINE (Hammersmith Infant Neurological Examination) score <57 and/or >5 asymmetries and/or General Movement Assessment (GMA) with absent or abnormal fidgety movements, assessed at 4 months). The care pathway involved an average of 4 professionals; there were with no major between-group differences, except for more frequent consultations with the general practitioner in the NE group (64% vs 29%, p=0.018). All parents declared that they were satisfied with their child’s follow-up, although more than half (55%) of NE parents felt that they were responsible for relaying medical information. In contrast, 57% of parents re-ported not receiving psychological support. Conclusions Parental stress was markedly elevated in both groups. Enhanced psychological and social support, together with tailored early intervention programs, particularly for families of infants with NE, appear necessary. Trial registration This article presents a cross-sectional analysis of the princeps DeStresS study, registered on clinicaltrials.gov as NCT05233371 on 7 February 2022.