Extremely preterm birth is a high-risk condition affecting both short- and long-term health. They may require intensive neonatal care. Whether the level of care they receive depends on the social status of the mother is a question recently explored in a study that appeared online in JAMA Pediatrics.

Background

Redirection of care for the extremely preterm infant indicates a shift in goals, such as from long-term survival to withholding or withdrawing treatment intended to sustain life. In one US hospital, one in five such infants died because their care was withheld from 1970 to 1972, and another reported that removing mechanical ventilation was the cause of death for over 40% of their infants in the special nursery.

The extent to which parental discussions on redirection of care are influenced by maternal social determinants of health (SDOH) is largely unknown. Drawing on prior studies on racial differences in the experiences of people at the end of life, it appears that poorer and Black children with chronic illnesses are more likely to have intense interventions and to die in hospital rather than at home, compared to White children.

Scientists at the National Institute of Child Health and Human Development Neonatal Research Network (NRN) have found similar rates of illness and in-hospital deaths among different races but higher levels of redirection of care for White non-Hispanic infants vs Black or Hispanic infants. Children with high-risk maternal SDOH were also more likely to be neurodevelopmentally impaired compared to those born to low-risk mothers.

Study aims

The current study is based on the hypothesis that structural racism, interpersonal racism, or mistrust of medical professionals may manifest in different outcomes for White vs Black infants. The researchers also followed up with neurodevelopment impairment (NDI) and mortality rates at two years to better understand the range of possible outcomes.

The investigators looked for data on documented discussions with the parents on redirection of care and for withdrawal, limitation, or withholding of treatments to prolong life. These included intubation or ventilation, nutrition and hydration, and medication.

About the study cohort

The study followed a prospective design, including all preterm infants born before 29 completed weeks of gestation during the period from April 2011 to December 2020 at several designated centers in the USA. They were followed up between January 2013 and October 2023.

The researchers aimed to identify whether infant care was redirected based in any way on the maternal social determinants. They also assessed the rates of death and impaired neurodevelopment at the age of 22 to 26 months, based on the age calculated from the actual gestational age at birth.

The cohort was classified as White or Black only since very few belonged to other races. The mothers were categorized by education (high school graduate or less), insurance type (none, private or public), race, and ethnicity (Hispanic vs non-Hispanic).

Redirection of care

The cohort included about 15,600 infants, the mean gestational age being 26 weeks. They were equally divided between male and female infants. About 2,300 infants (15%) were subjects of discussions about redirection of care.

These infants were less likely to be born after maternal steroid administration, were more premature, and were more likely to have one or more neonatal illnesses such as severe intracranial bleeds, late-onset sepsis, or severe retinopathy of prematurity (plus disease). All these conditions occurred in at least a third of infants. In almost 75%, the mothers had at least one SDOH.

Social factors and redirection of care

The unadjusted analysis failed to show any difference in the number of discussions about redirection of care between White and Black infants. After controlling for maternal and infant factors, infants of Black mothers had 16% lower odds of such a discussion compared to infants of White mothers.

Hispanic mothers were almost 30% less likely to have such discussions about redirection of care than non-Hispanic mothers. There was no difference by type of insurance – public, private, or none – or by level of education.

Redirection of care occurred less often among Black or Hispanic infants, with the odds being 25% and 35% lower, respectively. Maternal education and insurance type did not influence this event either.

Outcomes at two years

At the corrected age of 22 to 26 months, the researchers found that 90% of infants whose parents had documented redirection of care discussions had died before this date, almost all during their birth hospitalization, and 97% of survivors continued to need special care at two years.

Among those of the whole cohort who survived and were discharged, 76% were followed up. While over 80% and 90% of White and Hispanic infants were followed up, the rate was somewhat lower at 71% and 73% for Black and non-Hispanic infants, respectively.

Of the survivors, 85% had NDI, including nearly 95% of infants born to Black mothers vs 80% of those born to White mothers. Death occurred for 91% of infants of non-Hispanic mothers vs 85% among infants of Hispanic mothers.

What are the implications?

“For infants born extremely preterm, redirection of care discussions occurred less often for Black and Hispanic infants than for White and non-Hispanic infants.” The type of analysis performed rules out the possibility that race and ethnicity acted as a proxy for educational and insurance type differences.

While the underlying reasons require further exploration, previous research indicates a greater risk of death and NDI among survivors for whom such discussions have occurred beforehand. Depending on the social and other background, the costs and emotional impact of providing long-term special care for these children may vary significantly.

This study emphasizes the need to consider the social and demographic attributes of patients in research on healthcare practices and outcomes. Different SDOHs have separate impacts on the way physicians and patients interact and on the type and duration of neonatal intensive care. This merits further study.