490 - Parent-reported health-related quality of life (HRQoL) of NICU graduates in their first year: a prospective cohort study

Saturday, May 4, 2024

3:30 PM – 6:00 PM ET

Poster Number: 490
Publication Number: 490.1505

Presenting Author(s)

Nienke H. van Dokkum, MD PhD (she/her/hers)

Pediatric Resident / Post-doc Researcher Neonatology
Division of Neonatology, Beatrix Children's Hospital, University Medical Center Groningen
Groningen, Groningen, Netherlands

Background: Research on health-related quality of life (HRQoL) in the first year of life is scarce, while more understaning may contribute to improved follow-up care for NICU graduates.

Objective: We aimed to assess HRQoL of NICU graduates during their first year after birth from the parents’ perspective using the newly developed Infant Quality of Life Instrument (IQI) mobile application instrument.

Design/Methods: This was a prospective cohort study including NICU graduates of all gestational ages. Parents were asked to participate during or after NICU stay and were reminded to complete the Instrument at 3, 6, 9 and 12 months. We assessed which of seven HRQoL domains (Sleeping, Feeding, Breathing, Stooling, Mood, Skin, Interaction) proved most problematic during infants’ first year after birth and whether there were differences between the gestational age groups.

Results: The IQI was completed 219 times by 108 parents, of whom 31 (29%) of fullterm children, 19 (18%) of moderately-late preterm children (gestational age 32-37 weeks), 45 (42%) of very preterm children (gestational age 28-32 weeks), and 13 (12%) of extremely preterm children (gestational age < 28 weeks). Approximately one-third of the data (31.7%) were collected at 3 months (corrected) age and one-fifth (19.9%) during NICU stay. Most parents completed the IQI once. The mean domain scores varied greatly between domains and over time (Table 1). Over time, the three domains proving most problematic from the parents’ perspective were Feeding (ranging from 14% to 43%), Sleeping (ranging from 23% to 42%), and Interaction. Problems concerning Interaction decreased significantly during the first year, from 86% to 19%. For the domains Breathing, Sleeping, and Skin the trajectory of extremely preterm infants were more often problematic than the other gestational ages.

Conclusion(s): During the first year after birth parents of NICU graduates report most problems in the domains Feeding, Sleeping, and Interaction. To devise suitable interventions future studies should examine which aspects of these domains were experienced as problematic.