TY - JOUR
T1 - Practice variations for fetal and neonatal congenital heart disease within the Children’s Hospitals Neonatal Consortium
AU - the CHNC Cardiac Focus Group
AU - Leon, Rachel L.
AU - Levy, Philip T.
AU - Hu, June
AU - Yallpragada, Sushmita G.
AU - Hamrick, Shannon E.G.
AU - Ball, Molly K.
AU - Sullivan, Kevin
AU - McKay, Victor
AU - Limjoco, Jamie
AU - Murthy, Karna
AU - Falciglia, Gustave
AU - Lyle, Robert
AU - Rogers, Becky
AU - Welch, Cherie
AU - Piazza, Anthony
AU - Joe, Priscilla
AU - Hansen, Anne
AU - Grover, Theresa
AU - Coghill, Carl
AU - Yanowitz, Toby
AU - Savani, Rashmin
AU - Pallotto, Eugenia
AU - Short, Billie
AU - Massaro, An
AU - Sysyn, Gregory
AU - Chapman, Rachel
AU - Natarajan, Girija
AU - Willett, Lynne
AU - Birge, Nicole
AU - Uhing, Michael
AU - Datta, Ankur
AU - Mikhael, Michel
AU - Haberman, Beth
AU - Golioto, Annmarie
AU - Chi, Annie
AU - Johnson, Yvette
AU - Wadhawan, Rajan
AU - Lee, Kyong Soon
AU - Talati, Ajay
AU - Reber, Kristina
AU - Ling, Con Yee
AU - Speziale, Mark
AU - Moyer, Laurel
AU - Engle, William
AU - Jacobsen-Misbe, Elizabeth
AU - DiGeronimo, Robert
AU - Touch, Suzanne
AU - Rao, Rakesh
AU - Brozanski, Beverly
AU - Suresh, Gautham
AU - Padula, Michael
AU - Munson, David
N1 - Funding Information:
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: [email protected].
Publisher Copyright:
© 2022, The Author(s), under exclusive licence to the International Pediatric Research Foundation, Inc.
PY - 2023/5
Y1 - 2023/5
N2 - 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.
AB - 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.
UR - http://www.scopus.com/inward/record.url?scp=85139006518&partnerID=8YFLogxK
U2 - 10.1038/s41390-022-02314-2
DO - 10.1038/s41390-022-02314-2
M3 - Article
C2 - 36167818
AN - SCOPUS:85139006518
SN - 0031-3998
VL - 93
SP - 1728
EP - 1735
JO - Pediatric research
JF - Pediatric research
IS - 6
ER -