Factors Associated With Attendance for Cardiac Neurodevelopmental Evaluation.

BACKGROUND AND OBJECTIVES: Neurodevelopmental evaluation of toddlers with complex congenital heart disease is recommended but reported frequency is low. Data on barriers to attending neurodevelopmental follow-up are limited. This study aims to estimate the attendance rate for a toddler neurodevelopmental evaluation in a contemporary multicenter cohort and to assess patient and center level factors associated with attending this evaluation. METHODS: This is a retrospective cohort study of children born between September 2017 and September 2018 who underwent cardiopulmonary bypass in their first year of life at a center contributing data to the Cardiac Neurodevelopmental Outcome Collaborative and Pediatric Cardiac Critical Care Consortium clinical registries. The primary outcome was attendance for a neurodevelopmental evaluation between 11 and 30 months of age. Sociodemographic and medical characteristics and center factors specific to neurodevelopmental program design were considered as predictors for attendance. RESULTS: Among 2385 patients eligible from 16 cardiac centers, the attendance rate was 29.0% (692 of 2385), with a range of 7.8% to 54.3% across individual centers. In multivariable logistic regression models, hospital-initiated (versus family-initiated) scheduling for neurodevelopmental evaluation had the largest odds ratio in predicting attendance (odds ratio = 4.24, 95% confidence interval, 2.74-6.55). Other predictors of attendance included antenatal diagnosis, absence of Trisomy 21, higher Society of Thoracic Surgeons-European Association for Cardio-Thoracic Surgery mortality category, longer postoperative length of stay, private insurance, and residing a shorter distance from the hospital. CONCLUSIONS: Attendance rates reflect some improvement but remain low. Changes to program infrastructure and design and minimizing barriers affecting access to care are essential components for improving neurodevelopmental care and outcomes for children with congenital heart disease.

Social-environmental factors as mediators of IQ and achievement differences across race groups in adolescents with high risk congenital heart disease.

An increasing number of neuropsychologists are evaluating children with congenital heart disease (CHD). When conceptualizing results, the provider must consider medical risks such as abnormal neuroimaging and comorbidities, along with social risks such as socioeconomic status. The aim of the current study was to examine the influence of parent income and education on IQ and achievement across race groups in adolescents with CHD, while also accounting for medical risk (e.g., gestational age, number of ventricles, neuroimaging). This is a single-center cross-sectional study, including 92 children ages 12-19 years (median 14.9 years; 59% male; 71% White; 29% Black) with high risk CHD (i.e., cardiac surgery <12 months) who were referred for a neuropsychological evaluation. Retrospective data were retrieved from a larger clinical registry. Patients completed an intellectual assessment (WISC-V; WAIS-IV; WASI-II), Word Reading and Math Calculation tests. Parents completed questionnaires assessing the family environment [income, parent education]. Results revealed significant differences in IQ when comparing children who were Black versus White (11.4 point IQ difference); however, around 70% of this variance was explained by parent income and education. Medical variables accounted for 12% of the variance in IQ. For academics, parent income and education accounted for 91.5% and 78.8% of the variance in race group differences for reading and math, respectively. Medical risk and sex explained 11.7% and 14.7% of the variance in reading and math, respectively. Findings suggest that sociodemographic factors should be weighed heavily during the neuropsychological evaluation, including prioritizing risk, making recommendations, and facilitating referrals.

Implementing standard screening for autism spectrum disorder in CHD.

INTRODUCTION: While the overall prevalence of autism is 1.7% in the United States of America, research has demonstrated a two- to five-fold increase in CHD. The Cardiac Neurodevelopmental Outcome Collaborative recommends screening for autism from infancy through adolescence. This study investigated the frequency of autism concerns at a single Cardiac Neurodevelopmental Program and examined current clinical practice as a way to improve quality of care. MATERIALS AND METHODS: Patients (n = 134; mean age = 9.0 years) included children with high-risk CHD who completed a neurodevelopmental evaluation following a formalised referral to the Cardiac Neurodevelopmental Program between 2018 and 2019. Retrospective chart review included parent report on the Behaviour Assessment System for Children-3 and Adaptive Behaviour Assessment System-3. Descriptive and correlation analyses were completed. RESULTS: In this sample, 11.2% presented with autism-related concerns at referral, 2 were diagnosed with autism, 9 were referred to an autism specialist (6 confirmed diagnosis; 3 not completed). Thus, at least 5.9% of the sample were diagnosed with autism following thorough clinical evaluation. Analyses showed atypicality, along with deficient adaptability, leisure, social, and communication skills. Frequency of early intervention, school supports, and relation with comorbidities are reported. DISCUSSION: Prior to assessment recommendations by the Cardiac Neurodevelopmental Outcome Collaborative, autism screening may not be completed systematically in clinical care for CHD. The current sample demonstrates a high frequency of autism in the typically referred clinical sample. Commonly used parent-report measures may reveal concerns but will not help diagnosis. Systematic use of an autism screener is essential.