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Three-Year Post-Neonatal Intensive Care Unit Health Care Utilization Among Infants with Congenital Anomalies
Nicole Welke1, Joanne Lagatta2, Steven Leuthner2
1Department of Pediatrics, University of Minnesota, Minneapolis, MN.
Insights
Children with congenital anomalies experience high healthcare use post-neonatal intensive care unit (NICU) discharge, including frequent readmissions and surgeries. Those with complex conditions or needing durable medical equipment (DME) face the greatest risks.
Area of Science:
- Pediatric Health Outcomes
- Congenital Anomalies Research
- Healthcare Utilization Studies
Background:
- Neonatal intensive care unit (NICU) graduates with congenital anomalies represent a vulnerable population requiring ongoing medical support.
- Understanding long-term healthcare needs is crucial for optimizing care transitions and resource allocation.
Purpose of the Study:
- To delineate 3-year healthcare utilization patterns in children with congenital anomalies after discharge from a level IV NICU.
- To identify specific anomaly types and associated factors linked to increased healthcare use.
Main Methods:
- Retrospective chart review of infants with congenital anomalies from a level IV NICU.
- Analysis of hospital readmissions, surgical procedures, and durable medical equipment (DME) use up to 3 years post-discharge.
- Stratification of outcomes by anomaly type.
Main Results:
- Over half of the children experienced readmissions within the first two years, with one-third readmitted in the third year.
- Approximately 50% underwent surgeries, and 62% received DME at discharge, most commonly gastrostomy tubes.
- Higher readmission rates were observed for multiple, musculoskeletal, and central nervous system anomalies compared to abdominal-wall defects.
Conclusions:
- Children with congenital anomalies exhibit significant healthcare utilization in early childhood, necessitating proactive management.
- Factors such as multiple anomalies, genetic syndromes, and reliance on DME predict higher healthcare needs.
- Enhanced family support, discharge training, and telehealth integration are recommended strategies to mitigate risks.
Objective:
To describe 3-year post-neonatal intensive care unit (NICU) health care use among children with congenital anomalies discharged home from a level IV NICU.
Study Design:
Retrospective chart review of children with congenital anomalies enrolled in a previous prospective cohort study from 201 to 2020. We assessed hospital readmission rate, number of surgeries, and durable medical equipment (DME) use by type of anomaly.
Results:
Among 166 infants enrolled in the original study, 158 survived to NICU discharge. One-third of the cohort had a genetic anomaly. Six of 158 patients (4%) died before 3 years of age. More than one-half the children were readmitted within the first 2 years of life, and one-third were readmitted in the third year of life. Readmissions were greatest for those with multiple, musculoskeletal, and central nervous system anomalies and lowest for abdominal-wall defects. Approximately one-half the children underwent surgeries, and this proportion remained constant over the 3-year time. Sixty-two percent of patients received DME at discharge, with gastrostomy tubes being the most common. Gastrostomy tubes were still present in 75% of the patients at 3 years of age.
Conclusion:
Children with congenital anomalies are at risk for increased health care use during early childhood. Those with multiple anomalies, a genetic syndrome, musculoskeletal, and central nervous system anomalies and those discharged with DME are at greatest risk whereas those with abdominal-wall defects are at lowest risk. Provider awareness, high-quality discharge training, parent psychological support, greater assimilation of families in the NICU, and telehealth may be some strategies to better support these families.
