P2C200: Very Preterm Birth and Health-related Quality of Life of Infants and Parents

Background: Very preterm birth ( < 32 weeks of gestation) and the prolonged neonatal intensive care unit (NICU) hospitalization represent stressful life events that continue to impact infants and their parents after discharge. Health-related quality of life (HRQOL) is a multi-dimensional construct encompassing physical, emotional, and social functioning, perceived health, and well-being. Little is known about HRQOL of infants born very preterm after NICU discharge or about the extent to which maternal and infant characteristics influence HRQOL. We conducted a longitudinal study to 1) describe HRQOL in a cohort of very preterm infants at 4 months and 12 months of corrected age, and 2) identify maternal and infant determinants of HRQOL.

Methods: We conducted an observational study using data from 38 participants in the Nourish Study, an ongoing single-center NICU diet intervention trial. At 4 and 12 months of corrected age, we administered the Infant Toddler Quality of Life (ITQOL), a parent-reported survey grounded in the World Health Organization’s concept of health as a state of well-being rather than merely the absence of disease. The ITQOL comprises six infant-focused domains (Physical Abilities, Growth and Development, Bodily Pain/Discomfort, Temperament and Moods, Behavior, General Health Perceptions) and two parent-focused domains (Parent Impact-Emotional and Parent Impact-Time). Higher scores indicate more favorable outcomes. We analyzed scores as continuous variables and compared median scores between 4- and 12-month time points (Wilcoxon Signed Rank test). We also categorized scores as < 25th vs. ≥25th percentile based on United States norms and compared the proportion of infants with score < 25th percentile vs. expected 25%. We also compared scores across categories of maternal and infant characteristics (Wilcoxon Rank Sum or Kruskal Wallis tests).

Results: Median (interquartile range) infant gestational age was 29 (27-30) weeks and 26 (68%) were male. Table 1 shows ITQOL scores. 4-month and 12-months scores were not statistically different. The proportion of participants with scores < 25th percentile was greater than the reference population in domains of Physical Abilities, Growth and Development, General Health, and Parent-Impact Emotional. Table 2 shows associations of maternal and infant characteristics with ITQOL scores. Maternal age < 30 years was associated with greater parental emotional impact and time limitations. Birth weight < 1000 grams and gestational age < 28 weeks were associated with greater physical ability limitations, and bronchopulmonary dysplasia was associated with worse General Health.

Conclusion: Very preterm birth negatively impacts infant HRQOL up to a year after NICU discharge. Mothers < 30 years of age may benefit from additional emotional support. Infant birth weight < 1000 grams, gestational age < 28 weeks, and bronchopulmonary dysplasia were all associated with lower HRQOL, suggesting that infant medical vulnerability in the NICU is a key determinant of HRQOL after discharge.