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A Prospective Study of Parent Health-Related Quality of Life before and after Discharge from the Neonatal Intensive
Sarah McAndrew1, Krishna Acharya1, Jacqueline Westerdahl2
1Department of Pediatrics, Medical College of Wisconsin, Milwaukee, WI.
Insights
Parents of extremely preterm infants experienced lower health-related quality of life (HRQL) in the neonatal intensive care unit (NICU), but showed significant improvement after discharge. Complex home care needs were linked to poorer long-term HRQL.
Area of Science:
- Neonatal Intensive Care Unit (NICU) care
- Parental Health-Related Quality of Life (HRQL)
- Preterm infant outcomes
Background:
- Parental health-related quality of life (HRQL) is crucial during infant hospitalization.
- Neonatal intensive care unit (NICU) stays significantly impact parental well-being.
- Understanding factors affecting parental HRQL is essential for supportive care.
Purpose of the Study:
- To examine the association between infant illness severity and parent demographics with parental HRQL.
- To assess parental HRQL during and 3 months after neonatal intensive care unit (NICU) hospitalization.
- To compare HRQL outcomes between parents of extremely preterm infants and other NICU-admitted infants.
Main Methods:
- Prospective study of 167 parent-infant dyads admitted to a level IV NICU for ≥14 days.
- Parental HRQL measured using the Pediatric Quality of Life Inventory Family Impact Module.
- Multivariable regression analysis identified risk factors for HRQL differences.
Main Results:
- Parents of extremely preterm infants reported significantly lower HRQL during NICU hospitalization (-7 points; P=.013).
- After discharge, parents of extremely preterm infants showed significant HRQL improvement (+10 points; P=.001).
- Tracheostomy, home oxygen, and readmission were associated with lower HRQL 3 months post-discharge.
Conclusions:
- Extremely preterm infants' parents experience greater HRQL fluctuations during and after NICU stays.
- Complex home care requirements negatively impact parental HRQL post-discharge.
- Balancing home discharge benefits with the challenges of complex care is vital.
Objective:
To determine how infant illness and parent demographics are associated with parent health-related quality of life (HRQL) during and 3 months after hospitalization in the neonatal intensive care unit (NICU). We hypothesized that parents of extremely preterm infants would report lower NICU HRQL than other parents, and that all parents would report improved HRQL after discharge.
Study Design:
This prospective study of parent-infant dyads admitted to a level IV NICU for ≥14 days from 2016 to 2017 measured parent HRQL before and 3 months after discharge using the Pediatric Quality of Life Inventory Family Impact Module. Multivariable regression was used to identify risk factors associated with HRQL differences during hospitalization and after discharge.
Results:
Of the 194 dyads, 167 (86%) completed the study (24% extremely preterm; 53% moderate to late preterm; 22% term). During the NICU hospitalization, parents of extremely preterm infants reported lower adjusted HRQL (-7 points; P = .013) than other parents. After discharge, parents of extremely preterm infants reported higher HRQL compared with their NICU score (+10 points; P = .001). Tracheostomy (-13; P = .006), home oxygen (-6; P = .022), and readmission (-5; P = .037) were associated with lower parent HRQL 3 months after discharge, adjusted for NICU HRQL score.
Conclusions:
Parents of extremely preterm infants experienced a greater negative impact on HRQL during the NICU hospitalization and more improvement after discharge than parents of other infants hospitalized in the NICU. Complex home care was associated with lower parent HRQL after discharge. The potential benefit of home discharge should be balanced against the potential negative impact of complex home care.
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