Living with Severe Bronchopulmonary Dysplasia-Parental Views of Their Child's Quality of Life.

OBJECTIVE: To assess parents' views of their children's health-related quality of life (HRQoL) and the association between neonatal morbidities and HRQoL in children with severe bronchopulmonary dysplasia (BPD) who survived to 18-36 months of corrected age.

STUDY DESIGN: Study population included infants born <32 weeks of gestational age with severe BPD. At 18-36 months of corrected age, parents of children with severe BPD completed age appropriate validated Pediatric Quality of Life Inventory assessing parental views of their child's physical (PHY-QoL) and psychosocial HRQoL (PS-QoL). Ten neonatal morbidities provided a composite morbidity score between 0 and 10. Linear regression evaluated associations between PHY-QoL and PS-QoL with composite morbidity score, adjusting for gestational age, sex, corrected age at assessment.

RESULTS: Seventy children (67% male, gestational age 26.1 ± 2.0 weeks, and birth weight 797 ± 318g) were enrolled at 27.1 ± 5.8 months of corrected age. Mean PHY-QoL and PS-QoL were 78.0 ± 21.9 and 75.3 ± 17.9, respectively, both significantly lower than reported means for term and preterm cohorts, with the exception of emotional QoL. Adjusted postnatal composite morbidity score was cumulatively associated with poorer PHY-QoL (P = .002) and poorer PS-QoL (P = .015). Presence of each additional neonatal morbidity was associated with a 4.4-point decrease in PHY-QoL and 2.8-point decrease in PS-QoL.

CONCLUSIONS: In this cohort, parental perceived HRQoL for their child with severe BPD was lower than expected for term and preterm populations. Neonatal morbidities had an additive association with poorer parental assessment of PHY-QoL and PS-QoL. These findings may aid in care of children with severe BPD and their families, both in the intensive care nursery and postdischarge.