Factors Associated With Attendance for Cardiac Neurodevelopmental Evaluation

Area of Science:

• Pediatric Cardiology
• Neurodevelopmental Pediatrics
• Health Services Research

Background:

• Neurodevelopmental evaluation is recommended for toddlers with complex congenital heart disease (CHD), but attendance rates are reportedly low.
• Limited data exists on the barriers hindering attendance at these crucial follow-up appointments.
• This study addresses the need for contemporary data on attendance rates and associated factors.

Purpose of the Study:

• To estimate the attendance rate for neurodevelopmental evaluations in a multicenter cohort of toddlers with complex CHD.
• To identify patient- and center-level factors associated with attending these evaluations.
• To inform strategies for improving neurodevelopmental care access for children with CHD.

Main Methods:

• Retrospective cohort study of children born 2017-2018 who underwent cardiopulmonary bypass.
• Data sourced from the Cardiac Neurodevelopmental Outcome Collaborative and Pediatric Cardiac Critical Care Consortium registries.
• Primary outcome: attendance for neurodevelopmental evaluation between 11-30 months; predictors included sociodemographic, medical, and center-specific factors.

Main Results:

• The overall attendance rate was 29.0% across 16 centers, with significant center-level variation (7.8%-54.3%).
• Hospital-initiated scheduling (OR=4.24) strongly predicted attendance compared to family-initiated scheduling.
• Other attendance predictors included antenatal diagnosis, absence of Trisomy 21, higher surgical risk, longer hospital stay, private insurance, and proximity to the hospital.

Conclusions:

• Despite some improvement, neurodevelopmental evaluation attendance rates for children with CHD remain low.
• Optimizing program infrastructure and design is crucial for enhancing access to care.
• Minimizing barriers to care is essential for improving neurodevelopmental outcomes in this vulnerable population.