Understanding Outcomes Disparities in Neonatal Short Bowel Syndrome and Intestinal Failure
May 6, 2025
A new study led by Vikram K. Raghu, MD, MS, and colleagues at UPMC Children's Hospital of Pittsburgh Division of Pediatric Gastroenterology, Hepatology and Nutrition provides new details on the clinical and socioeconomic burdens of neonatal short bowel syndrome with intestinal failure (SBS-IF), highlighting significant disparities linked to race and ethnicity. The research, published in JAMA Network Open and titled "Social and Financial Costs of Neonatal Intestinal Failure," utilized data from the Pediatric Health Information System (PHIS) database on 2,267 neonatal cases from 50 tertiary care children’s hospitals around the United States.
Clinical Presentation and Early Course of SBS-IF
SBS-IF in neonates is a complex condition. It typically manifests and is diagnosed in the earliest days of life and often requires extensive surgical intervention and long-term parenteral nutrition.
“For many of these infants, the condition can be identified within days of birth—either because part of the bowel is missing, injured, or nonviable,” says Dr. Raghu. “Some are born with congenital anomalies like gastroschisis, while others develop complications such as necrotizing enterocolitis, which severely damages the bowel and can result in intestinal failure.”
The clinical course for neonates with SBS-IF is often long and complicated. Many infants require multiple surgeries, prolonged stays in the NICU, and intensive family training before they can be safely discharged home on parenteral nutrition. About half of neonates with SBS-IF are able to transition off of PN within the first year. But for the other half, they may have a much longer duration (years) on parenteral nutrition depending on many factors of their underlying condition.
“From a developmental standpoint, these infants are particularly vulnerable. Nutrition is foundational to growth, and we are often in the position of having to delay or modify enteral feeding, which can be distressing for families,” says Dr. Raghu.
Developing a Cohort Identification Algorithm
To identify affected patients in the absence of a uniform diagnosis code — prior to the introduction of ICD-10 code K90.83 in late 2023 — Dr. Raghu’s team developed a novel algorithm to locate the cohort in the PHS dataset. Patients were identified based on a combination of postsurgical malabsorption diagnosis codes, prolonged neonatal intensive care unit stays, and receipt of at least 60 days of parenteral nutrition within a 74-day window. This methodology was validated using a subset of patients from UPMC Children’s for which complete medical records were available.
“Historically, studies of intestinal failure have been limited by small sample sizes, which restrict the kinds of conclusions we can draw,” says Dr. Raghu. “By developing a reliable way to identify a much larger cohort, we now have an opportunity to ask more meaningful questions—not just about the initial hospitalization, but about long-term outcomes in the first year of life, five years, and beyond.”
High Resource Utilization and Racial Disparities in Outcomes
The study’s primary outcome was length of stay during the initial hospitalization. The study found the median hospital stay was five months (150 days). Median costs for the admission exceeded $500,000.
Beyond these findings, however, the analysis revealed important disparities in outcomes for some populations
Even after controlling for medical factors such as diagnosis type, gestational age, central line–associated bloodstream infections (CLABSI), and venous thromboembolism (VTE), non-Hispanic Black infants remained hospitalized, on average, 16 days longer than their White counterparts.
“This was perhaps the most striking finding,” says Dr. Raghu. “The disparities persisted even after adjusting for the clinical variables we know are relevant. That strongly suggests that social and structural factors are contributing to these prolonged hospitalizations in ways that are not fully known at this point.”
Examining the Role of Neighborhood Opportunity and Social Factors
The study also evaluated the role of the Child Opportunity Index (COI), a neighborhood-level composite measure that includes indicators like educational access, environmental quality, and economic opportunity. While COI was correlated with race and other demographic variables, it was not independently associated with length of stay after accounting for race and ethnicity.
“This raises difficult but necessary questions about systemic barriers to more optimal discharge,” says Dr. Raghu. “Discharging a medically complex child safely from the NICU requires extensive home preparation, caregiver training, and often, access to home nursing. In under-resourced areas, these supports are harder to come by, and that can certainly contribute to longer stays in the hospital.”
Complications and Risk for Long-Term Morbidity
The investigation also uncovered data related to complications and morbidities in the cohort. Most notably, Dr Raghu and colleagues found that rates of CLABSI and VTE were more prevalent among Black children.
VTE, in particular, was seen in 14% of Black infants compared to 8% in others.
“This is a concerning finding because VTE can limit vascular access. Once central veins are no longer available, patients may require intestinal transplantation — not because the bowel is irreversibly nonfunctional, but because we run out of ways to deliver nutrition,” says Dr. Raghu.
Along these lines, Dr. Raghu and the study team are pursuing further research on risk factors and prevention strategies for VTE in this population.
Dr. Raghu and his team are actively working on additional research to understand what drives the elevated VTE risk and if it can be reduced or prevented.
“We are currently studying factors that contribute to thrombosis in this population, particularly during the highly inflammatory period following intestinal injury or surgery,” says Dr. Raghu. “The goal is to identify modifiable risks and consider targeted interventions that are appropriate for the neonatal population.
Barriers to Optimal Discharge Patterns
Insurance status was another aspect of the study the team looked into. Infants with government-sponsored insurance coverage stayed, on average the study found, 10 days longer in the hospital than those with commercial coverage.
“Based on our findings around this issue, it’s not reasonable to conclude payer status solely attributes to this disparity,” says Dr. Raghu. “At our institution, for example, Medicaid typically does cover home nursing services, which are an essential part of care for newborns with SBS-IF after they leave the hospital. The issue, I think, is more about geographic and logistical barriers — living in a rural or under-resourced area where home nursing or other needed support services is unavailable or they are unfamiliar with the complexity of caring for newborns with intestinal failure.”
Working Toward Standardized Discharge Protocols and Policy Solutions
Standardization of discharge processes may help mitigate these disparities. Currently, discharge readiness assessments and caregiver education protocols vary widely between hospitals.
“Within a single institution, you may have clear expectations and protocols around discharge of this patient population, but nationally, there’s no consistent framework or set of guidelines that currently exists,” says Dr. Raghu. “This is one of things we advocate for in the paper – studying and then developing minimum standards for discharge planning that can accommodate families with differing levels of social support.”
Implications for Practice and Policy
Beyond the human and clinical toll of prolonged hospitalizations, the financial burden on health systems is considerable. “Reducing even a fraction of unnecessary hospital days across this patient population could lead to significant cost savings, but more importantly, it would help alleviate strain on families and improve quality of life,” says Dr. Raghu.
The accompanying editorial in JAMA Network Open, written by Shweta Namjoshi, MD, MPH, and Valeria Cohran, MD, MS, underscores the urgency of addressing these inequities. They note that race-based disparities in neonatal intensive care are well-documented and not attributable to inherent biological differences. Rather, the disparities reflect systemic inequities in access, support, and social determinants of health.
“In many ways, intestinal failure is indicative of some of the broader challenges in pediatric health care delivery,” says Dr. Raghu. “It requires intense multidisciplinary support and close coordination between hospital-based and community-based systems. If we are serious about achieving equity in outcomes, we must address both the clinical and nonclinical factors that influence a child’s course from diagnosis to home.”
References
Raghu VK, Belaid S, Gutierrez S, et al. Social and Financial Costs of Neonatal Intestinal Failure. JAMA Network Open. 2025; 8(2): e2459548.
Namjoshi SS, Cohran VC. Equity in Neonatal Intestinal Failure—No Organ Left Behind. JAMA Network Open. 2025; 8(2): e2459507. Editorial.
Further Reading
