title: Feasibility of a Team Approach to Complex Congenital Heart Defect Neurodevelopmental Follow-Up: Early Experience of a Combined Cardiology/Neonatal Intensive Care Unit Follow-Up Program.
abstract: Infants with complex congenital heart disease are at high risk for poor neurodevelopmental outcomes. However, implementation of dedicated congenital heart disease follow-up programs presents important infrastructure, personnel, and resource challenges. We present the development, implementation, and retrospective review of 1- and 2-year outcomes of a Complex Congenital Heart Defect Neurodevelopmental Follow-Up program. This program was a synergistic approach between the Pediatric Cardiology, Cardiothoracic Surgery, Pediatric Intensive Care, and Neonatal Intensive Care Unit Follow-Up teams to provide a feasible and responsible utilization of existing infrastructure and personnel, to develop and implement a program dedicated to children with congenital heart disease. Trained developmental testers administered the Ages and Stages Questionnaire-3 over the phone to the parents of all referred children at least once between 6 and 12 months' corrected age. At 18 months' corrected age, all children were scheduled in the Neonatal Intensive-Care Unit Follow-Up Clinic for a visit with standardized neurological exams, Bayley III, multidisciplinary therapy evaluations and continued follow-up. Of the 132 patients identified in the Cardiothoracic Surgery database and at discharge from the hospital, a total number of 106 infants were reviewed. A genetic syndrome was identified in 23.4% of the population. Neuroimaging abnormalities were identified in 21.7% of the cohort with 12.8% having visibly severe insults. As a result, 23 (26.7%) received first-time referrals for early intervention services, 16 (13.8%) received referrals for new services in addition to their existing ones. We concluded that utilization of existing resources in collaboration with established programs can ensure targeted neurodevelopmental follow-up for all children with complex congenital heart disease.
authors.affiliation: From the Center for Perinatal Research at Nationwide Children's Hospital, Columbus, OH (O.C., N.L.M.); Department of Cell and Developmental Biology (H.S.B.), Division of Cardiology, Department of Pediatrics (H.S.B.), Department of Pediatric Rehabilitation (J.N., S.G., D.P., A.M., D.B.), Department of Pediatric Cardiac Surgery (D.B.), Vanderbilt University, Nashville, TN; and Department of Hearing and Speech Sciences, Vanderbilt University, Nashville, TN (N.L.M.).
authors.forename: Olena
authors.initials: O
authors.lastname: Chorna
authors.affiliation: From the Center for Perinatal Research at Nationwide Children's Hospital, Columbus, OH (O.C., N.L.M.); Department of Cell and Developmental Biology (H.S.B.), Division of Cardiology, Department of Pediatrics (H.S.B.), Department of Pediatric Rehabilitation (J.N., S.G., D.P., A.M., D.B.), Department of Pediatric Cardiac Surgery (D.B.), Vanderbilt University, Nashville, TN; and Department of Hearing and Speech Sciences, Vanderbilt University, Nashville, TN (N.L.M.).
authors.forename: H Scott
authors.initials: HS
authors.lastname: Baldwin
authors.affiliation: From the Center for Perinatal Research at Nationwide Children's Hospital, Columbus, OH (O.C., N.L.M.); Department of Cell and Developmental Biology (H.S.B.), Division of Cardiology, Department of Pediatrics (H.S.B.), Department of Pediatric Rehabilitation (J.N., S.G., D.P., A.M., D.B.), Department of Pediatric Cardiac Surgery (D.B.), Vanderbilt University, Nashville, TN; and Department of Hearing and Speech Sciences, Vanderbilt University, Nashville, TN (N.L.M.).
authors.forename: Jamie
authors.initials: J
authors.lastname: Neumaier
authors.affiliation: From the Center for Perinatal Research at Nationwide Children's Hospital, Columbus, OH (O.C., N.L.M.); Department of Cell and Developmental Biology (H.S.B.), Division of Cardiology, Department of Pediatrics (H.S.B.), Department of Pediatric Rehabilitation (J.N., S.G., D.P., A.M., D.B.), Department of Pediatric Cardiac Surgery (D.B.), Vanderbilt University, Nashville, TN; and Department of Hearing and Speech Sciences, Vanderbilt University, Nashville, TN (N.L.M.).
authors.forename: Shirley
authors.initials: S
authors.lastname: Gogliotti
authors.affiliation: From the Center for Perinatal Research at Nationwide Children's Hospital, Columbus, OH (O.C., N.L.M.); Department of Cell and Developmental Biology (H.S.B.), Division of Cardiology, Department of Pediatrics (H.S.B.), Department of Pediatric Rehabilitation (J.N., S.G., D.P., A.M., D.B.), Department of Pediatric Cardiac Surgery (D.B.), Vanderbilt University, Nashville, TN; and Department of Hearing and Speech Sciences, Vanderbilt University, Nashville, TN (N.L.M.).
authors.forename: Deborah
authors.initials: D
authors.lastname: Powers
authors.affiliation: From the Center for Perinatal Research at Nationwide Children's Hospital, Columbus, OH (O.C., N.L.M.); Department of Cell and Developmental Biology (H.S.B.), Division of Cardiology, Department of Pediatrics (H.S.B.), Department of Pediatric Rehabilitation (J.N., S.G., D.P., A.M., D.B.), Department of Pediatric Cardiac Surgery (D.B.), Vanderbilt University, Nashville, TN; and Department of Hearing and Speech Sciences, Vanderbilt University, Nashville, TN (N.L.M.).
authors.forename: Amanda
authors.initials: A
authors.lastname: Mouvery
authors.affiliation: From the Center for Perinatal Research at Nationwide Children's Hospital, Columbus, OH (O.C., N.L.M.); Department of Cell and Developmental Biology (H.S.B.), Division of Cardiology, Department of Pediatrics (H.S.B.), Department of Pediatric Rehabilitation (J.N., S.G., D.P., A.M., D.B.), Department of Pediatric Cardiac Surgery (D.B.), Vanderbilt University, Nashville, TN; and Department of Hearing and Speech Sciences, Vanderbilt University, Nashville, TN (N.L.M.).
authors.forename: David
authors.initials: D
authors.lastname: Bichell
authors.affiliation: From the Center for Perinatal Research at Nationwide Children's Hospital, Columbus, OH (O.C., N.L.M.); Department of Cell and Developmental Biology (H.S.B.), Division of Cardiology, Department of Pediatrics (H.S.B.), Department of Pediatric Rehabilitation (J.N., S.G., D.P., A.M., D.B.), Department of Pediatric Cardiac Surgery (D.B.), Vanderbilt University, Nashville, TN; and Department of Hearing and Speech Sciences, Vanderbilt University, Nashville, TN (N.L.M.). Nathalie.maitre@nationwidechildrens.org.
authors.forename: Nathalie L
authors.initials: NL
authors.lastname: Maitre
mesh_terms: D000367:Age Factors; D016507:Cardiology Service, Hospital / Q000458:organization & administration* / Q000706:statistics & numerical data; D002657:Child Development; D019033:Delivery of Health Care, Integrated / Q000458:organization & administration*; D002658:Developmental Disabilities / Q000175:diagnosis / Q000503:physiopathology / Q000534:rehabilitation; D061345:Early Medical Intervention / Q000458:organization & administration; D005240:Feasibility Studies; D005260:Female; D006296:Health Services / Q000706:statistics & numerical data; D006330:Heart Defects, Congenital / Q000175:diagnosis / Q000503:physiopathology / Q000628:therapy*; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D007363:Intensive Care Units, Neonatal / Q000458:organization & administration* / Q000706:statistics & numerical data; D015931:Intensive Care, Neonatal / Q000458:organization & administration* / Q000706:statistics & numerical data; D008297:Male; D017146:Models, Organizational; D009420:Nervous System / Q000254:growth & development*; D009460:Neurologic Examination; D009820:Ohio; D010348:Patient Care Team / Q000458:organization & administration*; D015397:Program Evaluation; D012017:Referral and Consultation / Q000458:organization & administration; D012189:Retrospective Studies; D011795:Surveys and Questionnaires; D013997:Time Factors; D016896:Treatment Outcome
keywords: heart defects, congenital; intensive care units, neonatal; neuroimaging; neurologic examination; referral and consultation