# Parent-Reported Health-Related Quality of Life (HRQoL) of NICU Graduates in Their First Year: A Prospective Cohort Study

## TL;DR

This study examines how NICU graduates' health-related quality of life is perceived by parents during their first year, identifying key areas needing attention.

## Contribution

The study introduces a new mobile app questionnaire to assess HRQoL in NICU graduates from parental perspectives.

## Key findings

- Feeding, Sleeping, and Interaction were the most problematic HRQoL domains for NICU graduates.
- Extremely preterm infants showed more frequent issues in these domains compared to other groups.
- Parental reports highlight the need for healthcare professionals to focus on these specific areas during follow-up care.

## Abstract

Health-related quality of life (HRQoL) in neonatal intensive care unit (NICU) graduates during the first year after birth is unknown. Gaining more insight into parental perspectives on HRQoL in this group may aid healthcare professionals in follow-up care. We aimed to assess HRQoL of NICU graduates during their first year after birth from a parental perspective using the newly developed Infant Quality of Life Instrument mobile application questionnaire. This was a prospective cohort study including NICU graduates of all gestational ages (N = 108). We assessed which of seven HRQoL domains, Sleeping, Feeding, Breathing, Stooling, Mood, Skin, and Interaction, proved most problematic during infants’ first year after birth and whether there were differences between the gestational age groups. 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 (decreasing from 86% to 19%). The trajectories of extremely preterm infants were more frequently problematic than those of other groups. Healthcare professionals should focus on these most problematic domains in their follow-up care.