Caring for a child with a history of severe Bronchopulmonary Dysplasia (BPD) can be a difficult task due to chronic respiratory complications, comorbidities and associated developmental delays. Studies in children aged two years and under have shown that increased respiratory symptoms and acute care usage in children with BPD were associated with lower self-reported health related quality of life (HRQoL) among the parents (McGrath-Morrow et al.). However, little is known about how a parent’s general perception of their child's health relates to the parent’s own HRQoL and to measures of the child’s health utilization at preschool age in children with severe BPD.

The Children’s Hospital of Philadelphia (CHOP) Neonatal/Infant Chronic Lung Disease (NeoCLD) Program is a multidisciplinary program for the acute care of newborns with severe lung disease, the majority of whom were born extremely preterm and have severe BPD. Our team is currently conducting a prospective follow-up study of health, developmental, and functional outcomes of infants who participated in this program since its inception in 2010. The current study aims to investigate relationships between parental self-reported HRQoL, the parent's general description of their child's health and the current medical status of graduates of the NeoCLD Program at 3-7 years of age. 

All data in this study was acquired from phone interviews with the guardians of the children eligible for the study. Our results confirm the relationship between acute care usage and parental HRQoL, while also showing other highly associated factors (usage of tracheostomy, home nursing, medications, therapies and rehospitalizations). Additionally, our results show that a parent having a positive view of their child's health is a strong indicator of a high HRQoL for the parent, despite having medically complicated children. 

Knowledge of factors that predict HRQoL for parent’s caring for children with BPD is important in identifying families that would benefit from additional support. Caring for children with BPD can be very straining on families and research evaluating health related quality of life for parents is important to ensure that the family is doing well.