Preschool Neurodevelopmental Outcomes in Children with Congenital Heart Disease.

OBJECTIVE: To describe preschool neurodevelopmental outcomes of children with complex congenital heart disease (CHD), who were evaluated as part of a longitudinal cardiac neurodevelopmental follow-up program, as recommended by the American Heart Association and the American Academy of Pediatrics, and identify predictors of neurodevelopmental outcomes in these children. STUDY DESIGN: Children with CHD meeting the American Heart Association/American Academy of Pediatrics high-risk criteria for neurodevelopmental delay were evaluated at 4-5 years of age. Testing included standardized neuropsychological measures. Parents completed measures of child functioning. Scores were compared by group (single ventricle [1V]; 2 ventricles [2V]; CHD plus known genetic condition) to test norms and classified as: normal (within 1 SD of mean); at risk (1-2 SD from mean); and impaired (>2 SD from mean). RESULTS: Data on 102 patients were analyzed. Neurodevelopmental scores did not differ based on cardiac anatomy (1V vs 2V); both groups scored lower than norms on fine motor and adaptive behavior skills, but were within 1 SD of norms. Patients with genetic conditions scored significantly worse than 1V and 2V groups and test norms on most measures. CONCLUSIONS: Children with CHD and genetic conditions are at greatest neurodevelopmental risk. Deficits in children with CHD without genetic conditions were mild and may not be detected without formal longitudinal testing. Parents and providers need additional education regarding the importance of developmental follow-up for children with CHD.

Risk and prevalence of developmental delay in young children with congenital heart disease.

BACKGROUND AND OBJECTIVE: Children with congenital heart disease (CHD) are at risk for developmental delay (DD). Changes in cognitive, language, and motor skills in early childhood have not been described. We report the results of a structured approach using longitudinal testing to identify problems and ensure early intervention in accordance with published guidelines. METHODS: Bayley Scales of Infant Development, Third Edition, were used to assess cognitive, language, and motor skills in 99 children with CHD. Subjects were evaluated 3 to 6 times in the first 3 years of life. DD was defined as scores >1 SD below the population mean. RESULTS: Cardiac anatomy was single ventricle (1V) in 34 subjects and 2 ventricles (2V) in 65. Medical comorbidities were present in 21% and genetic syndromes in 19%. Most subjects (75%) had DD in ≥1 area at ≥1 assessments. Subjects with 1V anatomy had equivalent outcomes to those with 2V. Cognitive and language scores declined in subjects with genetic syndromes but were stable and within the average range for subjects with 1V and 2V. Motor scores improved for subjects with 1V and 2V but remained low for those with genetic syndromes. In addition to age, need for supplemental tube feeding, longer cardiopulmonary bypass time, and shorter time since last hospitalization were significant predictors of developmental outcomes. CONCLUSIONS: DDs in young children with CHD are both common and dynamic. Providers should encourage longitudinal surveillance for children with CHD because exposure to risk and prevalence of DD change over time.

Evaluation of an early risk screener for PTSD in preschool children after accidental injury.

OBJECTIVES: To evaluate the effectiveness and most powerful selection of predictors of an early screening tool for posttraumatic stress disorder (PTSD) in a sample of 87 children ages 2 to 6 years after unintentional injury. METHODS: The examined screener was administered within 6 to 13 days post accident and consisted of an adapted version of the Pediatric Emotional Distress Scale (PEDS), the PEDS-ES (PEDS Early Screener), and questions on 5 additional risk factors (preexisting child behavioral problems, parental preexisting chronic mental or physical illness, pretraumatic life events in the family, parental feelings of guilt, parental posttraumatic stress). The PTSD Semi-structured Interview and Observational Record for Infants and Young Children served as criterion measure 6 months after the accident. A case was deemed positive when meeting criteria for full or partial PTSD. RESULTS: Use of the PEDS-ES without the additional risk factors performed best, with good sensitivity (85%) and moderate specificity (63%) for full or partial PTSD. CONCLUSIONS: The PEDS-ES allows for successful early screening of preschool-aged children after single accidental trauma. It may be used within a stepped-care model for early identification of individuals designated for possible secondary preventative interventions.