MD-PhD Candidate The University of Queensland–Ochsner Clinical School The University of Queensland-Ochsner Clinical School Hicksville, New York, United States
Background: Children with congenital heart disease (CHD) are at increased risk of neurodevelopmental delays/deficits. Periodic developmental surveillance and evaluation are critical for timely detection of impairments and targeted interventions to reduce their long-term morbidities. Limited data exist regarding attendance at neurodevelopmental follow-up of these high-risk children.
Objective: To characterize the patterns of attendance at neurodevelopmental follow-up from infancy to early adulthood among CHD population in USA. Of particular interest is to examine their associations with individual, family, and neighborhood factors within social determinants of health framework.
Design/Methods: Using a cross-sectional study design, 573 primary caregivers of children with CHD (28% single ventricle) aged 0–21 years, residing in USA, recruited from national CHD advocacy groups completed an online survey. Sample was stratified into six age groups: <1 year (n=55), 1–<3 years (n=140), 3–5 years (n=116), 6–9 years (n=105), 10–17 years (n=121), and 18–21 years (n=36). Participants reported if their child had attended at least one clinical neurodevelopmental follow-up, along with indicating their attendance across a range of age appropriate time-points. Data on child clinical and family psychosocial characteristics were also collected. Neighborhood-level data were extracted from ZIP codes across seven livability metrics.
Results: Overall, 53% of primary caregivers reported their child with CHD had attended at least one neurodevelopmental follow-up. As shown in Figure 1, the proportion of attendance relative to total eligible appointments decreased with increasing age. Specifically, <5% of children aged 6–21 years had a high attendance (>75% eligible appointments). In multivariable analysis, higher attendance at neurodevelopmental follow-up was associated with single ventricle diagnosis (p=.05), longer duration of first ICU stay (p=.01), younger child age (p<.001), grandparents’ involvement in child care (p=.01), higher social support (p=.01), and greater economic equality and educational opportunities in neighborhood (p=.06). Conclusion(s): Findings are novel in determining the rates and correlates of neurodevelopmental follow-up attendance among CHD population in USA. This has implications for developing innovative strategies and intervention frameworks to improve the developmental surveillance and evaluation of this high-risk population to optimize outcomes. Replication of these findings using population-based datasets is warranted.
Figure 1. Patterns of neurodevelopmental follow-up attendance relative to age-specific eligibility.
Note: 27% of cases in <1 year group were 0–5 months old and may not have qualified for a neurodevelopmental follow-up at the time of survey data collection, which may account for their low attendance.
Authors/Institutions: Gautam Dagur, The University of Queensland-Ochsner Clinical School, Hicksville, New York, United States; Jake A. Kleinmahon, Ochsner Hospital for Children, New Orleans, Louisiana, United States; Michelle Z. Gurvitz, Boston Children's Hospital, Boston, Massachusetts, United States; Rebeka Acosta, Conquering CHD, Cross Plains, Wisconsin, United States; Samudragupta Bora, Mater Research Institute, Faculty of Medicine, The University of Queensland, South Brisbane, Queensland, Australia
