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Practice variations for fetal and neonatal congenital heart disease within the Children’s Hospitals Neonatal Consortium

Abstract

Background

Many aspects of care for fetuses and neonates with congenital heart disease (CHD) fall outside standard practice guidelines, leading to the potential for significant variation in clinical care for this vulnerable population.

Methods

We conducted a cross-sectional survey of site sponsors of the Children’s Hospitals Neonatal Consortium, a multicenter collaborative of 41 Level IV neonatal intensive care units to assess key areas of clinical practice variability for patients with fetal and neonatal CHD.

Results

We received responses from 31 centers. Fetal consult services are shared by neonatology and pediatric cardiology at 70% of centers. Three centers (10%) routinely perform fetal magnetic resonance imaging (MRI) for women with pregnancies complicated by fetal CHD. Genetic testing for CHD patients is routine at 76% of centers. Preoperative brain MRI is standard practice at 5 centers (17%), while cerebral NIRS monitoring is regularly used at 14 centers (48%). Use of electroencephalogram (EEG) after major cardiac surgery is routine in 5 centers (17%). Neurodevelopmental follow-up programs are offered at 30 centers (97%).

Conclusions

Many aspects of fetal and neonatal CHD care are highly variable with evolving shared multidisciplinary models.

Impact

  • Many aspects of fetal and neonatal CHD care are highly variable.

  • Genetic testing, placental examination, preoperative neuroimaging, and postoperative EEG monitoring carry a high yield of finding abnormalities in patients with CHD and these tests may contribute to more precise prognostication and improve care.

  • Evidence-based standards for prenatal and postnatal CHD care may decrease inter-center variability.

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Fig. 1: Optimizing care for patients with congenital heart disease (CHD) from prenatal diagnosis to neonatal care and beyond.
Fig. 2: Postnatal neuromonitoring.
Fig. 3: Perceived variability of prenatal and postnatal congenital heart disease (CHD) care.

Data availability

All data generated or analyzed during this study are included in this published article and its Supplementary Information file.

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Acknowledgements

We are indebted to the following institutions that serve the infants and their families, and these institutions also have invested in and continue to participate in the Children’s Hospital’s Neonatal Database (CHND). Jeanette Asselin, Beverly Brozanski, David Durand (ex officio), Francine Dykes (ex officio), Jacquelyn Evans (Executive Director), Theresa Grover, Karna Murthy (Chair), Michael Padula, Eugenia Pallotto, Anthony Piazza, Kristina Reber, and Billie Short are members of the Children’s Hospitals Neonatal Consortium, Inc. For more information, please contact: support@thechnc.org.

Funding

No funding was obtained for this study. The Children’s Hospitals Neonatal Consortium provided administrative support for survey distribution.

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R.L.L.: concept, data collection and analysis, writing, revising, final approval. P.T.L.: concept, writing, revising, final approval. J.H., S.G.Y.: data analysis, revising, final approval. S.E.G.H., M.K.B.: concept, data analysis, revising, final approval.

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Correspondence to Rachel L. Leon.

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Leon, R.L., Levy, P.T., Hu, J. et al. Practice variations for fetal and neonatal congenital heart disease within the Children’s Hospitals Neonatal Consortium. Pediatr Res (2022). https://doi.org/10.1038/s41390-022-02314-2

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