The financial burden experienced by families of preterm infants after NICU discharge

Abstract

BACKGROUND AND OBJECTIVES: Describe the financial burden and worry that families of preterm infants experience after discharge from the neonatal intensive care unit (NICU). METHODS: We surveyed 365 parents of preterm infants in a cross-sectional study regarding socio-demographics, supplemental security income (SSI), and financial worry. We completed a multivariable logistic regression model to examine the adjusted association of financial worry with modifiable factors. RESULTS: We found that 53% of participants worried about healthcare costs after NICU discharge. After adjusting for sociodemographic and infant characteristics, we identified that, aOR (95% CI), out-of-pocket costs from the NICU index hospitalization, 3.51 (1.7, 7.26) and durable medical equipment use, 2.41 (1.11, 5.23) was associated with increased financial worry while enrollment in SSI, 0.38 (0.19, 0.76) was associated with decreased financial worry. CONCLUSIONS: We identified factors that could contribute to financial burden after NICU discharge that may advise future work to target financial support systems.

The Role of Work as a Social Determinant of Health in Mother’s Own Milk Feeding Decisions for Preterm Infants: A State of the Science Review

“…Once discharged from the hospital, PT infants may have frequent clinic and therapy visits and often need specialized care in the home [ 65 , 66 ]. For example, in a study of PT infants up to 24 months corrected age (i.e., age corrected for prematurity), 71% of infants had at least two clinic visits per month, 60% had at least one daily prescription medication, and 20% had durable medical equipment, such as oxygen, a feeding tube, or tracheostomy [ 66 ]. Additionally, three-quarters used early intervention services that require frequent therapy encounters, averaging between 1.8 to 4.4 h of therapy per month, depending on the type of service [ 66 , 67 ].…”

“…For example, in a study of PT infants up to 24 months corrected age (i.e., age corrected for prematurity), 71% of infants had at least two clinic visits per month, 60% had at least one daily prescription medication, and 20% had durable medical equipment, such as oxygen, a feeding tube, or tracheostomy [ 66 ]. Additionally, three-quarters used early intervention services that require frequent therapy encounters, averaging between 1.8 to 4.4 h of therapy per month, depending on the type of service [ 66 , 67 ]. Apart from these health care needs, PT infants are susceptible to viral respiratory infections that may prevent attendance at a normal daycare facility, requiring families to utilize in-home childcare instead [ 68 , 69 ].…”

“…Women bear a disproportionate share of unpaid work in the home (i.e., domestic services performed within a household that could be outsourced to someone outside of the household for pay, such as housework, yard work, running errands, and family care), and MOM provision is an additional mother-specific responsibility [ 84 , 85 , 86 , 87 ]. The “double burden” of work (i.e., paid work and unpaid work) that mothers who return to work experience [ 87 ] is further compounded by the additional needs of a PT infant [ 65 , 66 ], and mothers must decide how to allocate their scarce time between paid work, which provides income for the family, and unpaid work, including care of the PT infant and other family members. Although not specific to PT infants, one study of postpartum maternal workload reported that mothers (of primarily term infants) spend an average of 10.5 h per day providing care to the infant and other family members at 5 weeks postpartum, 7.2 h at 11 weeks, 4.7 h at 6 months, and 4.1 h at 12 months postpartum [ 86 ].…”

Regarding “Burden of Comorbidities and Healthcare Resource Utilization Among Medicaid-Enrolled Extremely Premature Infants”

“…In a study of 365 parents of premature infants, only 26% of parents whose newborns were hospitalized in the NICU discussed costs of care with NICU staff and only 19% of parents discussed costs of care with their pediatrician. 10 In a recent study, the CenteringPregnancy group demonstrated a novel approach to prenatal care involving group-based education. This method resulted in significant cost savings for CenteringPregnancy, with an estimated net savings of $67 293 reduction in NICU costs for 85 patients, or an average of approximately $792 per patient.…”

An Important Tool to Understand Durable Medical Equipment and Supply Use in Children

“…General pediatricians commonly feel unprepared to manage DMES and delegate DMES responsibilities to other service teams and support staff . Patients and families report substantial distress from DMES use and barriers to reliable access . While researchers recognize that DMES use can both positively and negatively affect health and health services, the lack of standardization in measuring DMES use prevents addressing important knowledge gaps.…”