271 - Parent Healthcare Related Quality of Life for Patients With BPD Improves After Discharge and Is Impacted by Healthcare Utilization

Poster Number: 271
Publication Number: 271.341

Kathryn EK. Berlin, Medical College of Wisconsin Affiliated Hospitals, MILWAUKEE, WI, United States; William Scott, Medical College of Wisconsin, Milwaukee, WI, United States; Sara Dawson, Medical College of Wisconsin, Milwaukee, WI, United States; Joanne M. Lagatta, Medical College of Wisconsin, Milwaukee, WI, United States

Background: Infants with bronchopulmonary dysplasia (BPD) have extensive healthcare needs during and after the neonatal intensive care unit (NICU). For parents of infants with BPD, it is unknown how post-discharge healthcare needs impact health-related quality of life (HRQL) over time.

Objective: To determine how infant illness and healthcare needs impact parent HRQL from NICU through the first year after discharge.

Design/Methods:

Single-center prospective, observational study of infants born < 32 weeks with BPD and their parents. The outcome was parent HRQL, measured with the PedsQL Family Impact Module before NICU discharge and both 3 and 12 months post-discharge. At 12 months, parent-reported child health outcomes included the Asthma Control Questionnaire, the Warner Initial Developmental Evaluation of Adaptive and Functional Skills, and questions from the National Survey of Children with Special Health Care Needs. NICU illness and post-discharge healthcare utilization were collected by chart review. Same-parent clinically important HRQL change over time was defined as ≥8.5 points (0.5 * standard deviation of NICU HRQL scores). Factors associated with HRQL change were assessed by multivariable linear regression, adjusting parent HRQL at 3 and 12 months for that parent’s NICU HRQL score and covariates associated with bivariable between-parent HRQL differences.

 

Results:

Of 144 infant-parent dyads, 129 (89%) had follow-up at 3 months and 113 (78%) at 12 months. Table 1 shows bivariable associations with between-parent HRQL differences. In the NICU, lower parent HRQL was associated with earlier gestational age, postnatal steroids, outborn status, and gastrostomy tubes. At 3 months, lower parent HRQL was associated with readmissions and home oxygen use. At 12 months, lower parent HRQL was associated with reports of difficulty breathing, lower developmental screens, and not playing with other children (Table 2). When comparing same-parent HRQL change over time, 81% of parents at 3 and 12 months reported the same or significantly improved HRQL compared to the NICU (Figure 1). At 12 months, significantly less HRQL improvement was seen for parents reporting infant respiratory symptoms (Table 2).

Conclusion(s):

Infant illness affects between-parent HRQL over the first year after discharge for infants with BPD. Most parents report similar or better HRQL after discharge compared to the NICU. Less improvement is reported by parents of infants experiencing respiratory symptoms at 12 months. Optimizing respiratory symptoms for infants with BPD is important for infants and families.