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

Circ Cardiovasc Qual Outcomes. 2016 Jul;9(4):432-40. doi: 10.1161/CIRCOUTCOMES.116.002614. Epub 2016 May 24.

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.

Keywords: heart defects, congenital; intensive care units, neonatal; neuroimaging; neurologic examination; referral and consultation.

MeSH terms

  • Age Factors
  • Cardiology Service, Hospital / organization & administration*
  • Cardiology Service, Hospital / statistics & numerical data
  • Child Development*
  • Delivery of Health Care, Integrated / organization & administration*
  • Developmental Disabilities / diagnosis
  • Developmental Disabilities / physiopathology
  • Developmental Disabilities / rehabilitation
  • Early Medical Intervention / organization & administration
  • Feasibility Studies
  • Female
  • Health Services / statistics & numerical data
  • Heart Defects, Congenital / diagnosis
  • Heart Defects, Congenital / physiopathology
  • Heart Defects, Congenital / therapy*
  • Humans
  • Infant
  • Infant, Newborn
  • Intensive Care Units, Neonatal / organization & administration*
  • Intensive Care Units, Neonatal / statistics & numerical data
  • Intensive Care, Neonatal / organization & administration*
  • Intensive Care, Neonatal / statistics & numerical data
  • Male
  • Models, Organizational
  • Nervous System / growth & development*
  • Neurologic Examination
  • Ohio
  • Patient Care Team / organization & administration*
  • Program Evaluation
  • Referral and Consultation / organization & administration
  • Retrospective Studies
  • Surveys and Questionnaires
  • Time Factors
  • Treatment Outcome