P1.216: Out of Pocket Non-Medical Costs and Lost Income of Parents of Preterm Neonates during Initial NICU Hospitalization

Background: Preterm birth costs the United States an estimated $25.2 billion per year. Beyond direct healthcare costs, parents of preterm infants also face non-medical costs that cause stress and financial worry. We aimed to (1) comprehensively describe out-of-pocket non-medical costs and lost income experienced by families of hospitalized preterm infants and (2) examine associations of out-of-pocket non-medical costs with household income level.

Methods: We used data from an ongoing randomized trial (Nourish Study, NCT03977259) that enrolled infants born < 31 weeks and their mothers from a single academic Level III NICU. For this analysis, we included data from 78 mothers who completed the “In-Hospital Family Costs” survey at the time of infant NICU discharge. Mothers also reported their annual household income. We described out-of-pocket non-medical costs in subcategories (transportation, childcare, accommodation, food, and household help) and total as any/none, in reported values, and as a percent of annual household income. We compared median out-of-pocket costs across household income levels using Wilcoxon Rank Sum and Kruskal Wallis tests. All costs were reported in US Dollars, inflated to 2024 using the consumer price index (Bureau of Labor Statistics).

Results: Median (interquartile range, IQR) maternal age at delivery was 32 (28, 35) years, 67% of mothers had completed at least 4 years of college, and most (89.7%) were married or living with a partner. Median (IQR) infant gestational age was 28.9 (27.3, 30.1) weeks and length of stay was 83 (63, 108) days; 24.4% were twins. Family reported total annual household income levels were: <$50000 (16.9%), $50,000-99,999 (18.5%), $100,000-199,999 (26.2%), and >$200,000 (38.5%). Most parents reported out-of-pocket costs for transportation (97%) and meals (93%) (Table 1). Fewer reported costs for childcare (11%) and accommodations (13%), but family costs within those categories were high. Time off from work was reported for 90% of mothers, 70% of spouses/partners, and 20% family/friends; of those who took time off, 30% of mothers, 23% of spouses/partners, and 53% of family/friends took time off without pay. We did not observe statistically significant differences in out-of-pocket non-medical costs by household income level (Table 2).

Conclusion: Among families with a hospitalized preterm infant < 31 weeks of gestation, most incurred non-medical costs related to transportation and meals. Fewer incurred costs related to childcare or accommodations, but when incurred, these costs were substantial. Quantifying out-of-pocket non-medical costs contributes to an overall understanding of the economic and family burdens associated with preterm birth. Studies utilizing the same survey can further report out-of-pocket non-medical costs. Limitations include being a single study, recall bias of parent-reported costs, and having no baseline levels of costs in each subcategory.