Better Neurodevelopmental Outcomes for Children with Congenital Heart Disease

Research study background

Experts at Children’s Hospital Colorado have reported new evidence suggesting that young children with congenital heart disease (CHD) who receive neurodevelopmental care while hospitalized for longer periods (a week or more) may experience a lower incidence of delirium and better cognitive outcomes.

Children with CHD are more prone to showing developmental delays than children who do not have CHD. Although more than half of this population will show developmental delays, the exact causes are still not fully understood. Research indicates that longer hospital stays early in life for CHD treatments are linked with worse neurodevelopmental outcomes, which can lead to multiple negative impacts in adulthood.

In 2020, the Heart Institute at Children’s Colorado introduced the Cardiac Inpatient Neurodevelopmental Care Optimization (CINCO) Program, built on five integrated, evidence-based interventions. An earlier study about CINCO describes the program’s multidisciplinary design and implementation. These programs, becoming more common at other pediatric cardiac centers, were the subject of a 2023 American Heart Association (AHA) science advisory. Emphasizing the potential benefits of developmental care for this population, the AHA called for increased research, funding and hospital infrastructure to better support and prioritize these interventions.

Researchers at Children’s Colorado investigated the associations between CINCO interventions, delirium and neurodevelopment in children under age 2 hospitalized with CHD. They analyzed 1,331 pediatric admissions for 1,019 participants who spent at least seven days in cardiac inpatient units at Children’s Colorado between 2018 and 2023.

Researchers used the Cornell Assessment of Pediatric Delirium to measure the number of days each patient experienced delirium. They identified a significant difference in delirium before and after the introduction of the CINCO program. During the two years before CINCO, patients on average experienced about 3 days of delirium per hospital stay. This dropped by 54% to just over 1 day per patient after 6 to 12 months of the CINCO program, and by the end of 3 years, the average patient experienced less than one day of delirium.

The study team assessed toddler-age neurodevelopmental outcomes using the Bayley Scales of Infant and Toddler Development, Fourth Edition, focusing on cognitive, language and motor development at 12 to 35 months old. Over the study period, cognitive scores improved from approximately 1 to 1.5 standard deviations below the mean for those hospitalized as infants prior to CINCO implementation, to within the clinically average range for children hospitalized after CINCO was initiated.

While the five CINCO interventions varied in their impact, all were independently linked to lower incidences of delirium. Notably, in patients under 10 months old, four of the five interventions were independently and significantly correlated with higher cognitive scores at follow-up visits after 12 months of age.

Clinical implications

“Through the CINCO program, the Heart Institute reduced delirium by more than 50% and improved cognitive outcomes in our most vulnerable children with CHD admitted early in life,” says Kelly R. Wolfe, PhD, a neuropsychologist in the Neuroscience Institute at Children’s Colorado and lead study author. “The CINCO program is intended to be generalizable to other centers; it is low-cost, low-risk and is showing promising results. The main resource required is a passionate and dedicated multidisciplinary team.”

This study highlights the importance of developmental care in inpatient pediatric cardiac settings. It is the first known research to identify potential associations between neurodevelopmental interventions in the hospital and reduced delirium and improved later cognitive outcomes in this population. Future research should include replication studies at other sites and looking at whether the benefits of programs like CINCO are still seen in older children.