Parent Health-Related Quality of Life for Infants with Congenital Anomalies Receiving Neonatal Intensive Care

Objective To examine factors associated with parent quality of life during and after neonatal intensive care unit (NICU) discharge among parents of infants with congenital anomalies admitted to the NICU. Study design This secondary analysis of 2 prospective cohort studies between 2016 and 2020 at a level IV NICU included parents of infants with major congenital anomalies receiving NICU care. The primary outcomes were parent health-related quality of life (HRQL) during the NICU stay and at 3 months post-NICU discharge. Results A total of 166 parent-infant dyads were enrolled in the study, 124 of which completed the 3-month followup interview. During the NICU stay, parent history of a mental health disorder (-13 points), earlier gestational age (-17 points), consultation by multiple specialists (-11 points), and longer hospital stay (-5 points) were associated with lower HRQL. Parents of infants with a neonatal surgical anomaly had higher HRQL (+4 points). At 3 months after NICU discharge, parent receipt of a psychology consult in the NICU, the total number of consultants involved in the child's care, and an infant with a nonsurgical anomaly were associated with lower parent HRQL. Parents of infants with a gastrostomy tube (-6 points) and those with hospital readmission (-5 points) had lower HRQL. Comparing same-parent differences in HRQL overtime, parents of infants with anomalies did not show significant improvement in HRQL on discharge home. Conclusion Parents of infants with congenital anomalies reported low HRQL at baseline and at discharge. Parents of infants with nonsurgical, medically complex anomalies requiring multispecialty care represent a vulnerable group who could be better supported during and after their NICU stay.