title: Implementation of a routine developmental follow-up program for children with congenital heart disease: early results.
abstract: OBJECTIVE
  To describe the implementation of a routine developmental follow-up program for children with congenital heart disease, summarize the developmental outcomes of the first clinic visits of the referred patients, and determine what factors predict variability in early developmental outcomes.
  
  
  METHODS
  Infants with congenital heart disease who had cardiac surgery within the first 30 days of life, had a cyanotic lesion (with or without surgery) or were believed to be at risk for developmental delay due to comorbid conditions or perioperative complications such as seizures or stroke were referred to the program as part of standard clinical care. Patients were evaluated using the Bayley Scales of Infant and Toddler Development-III. This study reports results from 95 patients (January 2007-October 2009) who had their first developmental follow-up visit at less than 1 year of age.
  
  
  RESULTS
  Patients were 7.2 ± 1.2 months at their first evaluation. Bayley scores (mean/standard deviation) for the entire group were: Cognitive 100.8 ± 11.9; Language 96.3 ± 12.7; and Motor 88.6 ± 18.6. Scores for language and motor achievement were significantly lower than population norms. 44% of children had at least one low score (defined as > 1 standard deviation below the mean). Of children meeting state criteria for early intervention services, 31% were not receiving any early intervention services. Risk factors for worse developmental outcomes (P < .05) included more open heart procedures, the presence of additional medical/genetic conditions, and the need for supplemental tube feedings. Developmental outcomes were not significantly related to gestational age, prenatal diagnosis, diagnostic category, or age at first surgery.
  
  
  CONCLUSIONS
  Implementation of a routine developmental follow-up program for congenital heart disease patients is possible and useful in identifying those patients who would benefit most from early intervention.
authors: Medical College of Wisconsin, Department of Pediatrics Children's Hospital of Wisconsin, Herma Heart Center, 9000 W Wisconsin Avenue, , Milwaukee, WI 53201-1997, USA. cbrosig@chw.org
authors: Cheryl Brosig
authors: CB
authors: Soto
authors: Olubunmi
authors: O
authors: Olude
authors: Raymond G
authors: RG
authors: Hoffmann
authors: Laurel
authors: L
authors: Bear
authors: Ann
authors: A
authors: Chin
authors: Mahua
authors: M
authors: Dasgupta
authors: Kathleen
authors: K
authors: Mussatto
mesh_terms: D000367:Age Factors; D000704:Analysis of Variance; D006348:Cardiac Surgical Procedures / Q000009:adverse effects; D002657:Child Development; D002663:Child Language; D002658:Developmental Disabilities / Q000175:diagnosis* / Q000209:etiology / Q000534:rehabilitation; D005260:Female; D006330:Heart Defects, Congenital / Q000150:complications / Q000175:diagnosis / Q000601:surgery*; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D016014:Linear Models; D008297:Male; D009048:Motor Skills; D016730:Program Development; D015397:Program Evaluation; D018570:Risk Assessment; D012307:Risk Factors; D016896:Treatment Outcome; D014922:Wisconsin