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Parent-Reported Health-Related Quality of Life (HRQoL) of NICU Graduates in Their First Year: A Prospective Cohort
Parel Heuvink1, Nienke H van Dokkum1, Koenraad N J A Van Braeckel1
1Division of Neonatology, Department of Pediatrics, Beatrix Children's Hospital, University Medical Center Groningen, University of Groningen, Hanzeplein 1, P.O. Box 30.001, 9713 GZ Groningen, The Netherlands.
Insights
Parental feedback reveals feeding, sleeping, and interaction challenges in neonatal intensive care unit (NICU) graduates during their first year. Extremely preterm infants faced more issues, guiding healthcare follow-up care.
Area of Science:
- Neonatal Health
- Pediatric Quality of Life Research
- Parental Health Outcomes
Background:
- Health-related quality of life (HRQoL) in neonatal intensive care unit (NICU) graduates is not well understood.
- Parental insights are crucial for optimizing follow-up care for NICU graduates.
- The Infant Quality of Life Instrument (IQOLI) mobile application offers a novel approach to assessing HRQoL.
Purpose of the Study:
- To evaluate the HRQoL of NICU graduates during their first year post-birth from a parental viewpoint.
- To identify the most challenging HRQoL domains for NICU graduates.
- To compare HRQoL challenges across different gestational age groups.
Main Methods:
- Prospective cohort study involving 108 NICU graduates of all gestational ages.
- Utilized the Infant Quality of Life Instrument (IQOLI) mobile application questionnaire for data collection.
- Assessed parental perspectives on seven HRQoL domains: Sleeping, Feeding, Breathing, Stooling, Mood, Skin, and Interaction.
Main Results:
- Feeding (14%-43%), Sleeping (23%-42%), and Interaction (86% decreasing to 19%) were the most problematic HRQoL domains reported by parents.
- Extremely preterm infants exhibited more problematic HRQoL trajectories compared to other gestational age groups.
- Significant variations in HRQoL domain challenges were observed across different gestational ages.
Conclusions:
- Parental perspectives highlight key areas for intervention in NICU graduate care, specifically feeding, sleeping, and interaction.
- Follow-up care strategies should prioritize addressing the identified problematic HRQoL domains.
- Tailored support for extremely preterm infants is essential to improve their first-year HRQoL.
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.
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