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Factors Associated With Attendance for Cardiac Neurodevelopmental Evaluation.

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Attendance for neurodevelopmental evaluations in toddlers with congenital heart disease remains low at 29%. Hospital-initiated scheduling significantly improves attendance, highlighting the need to address barriers to care.

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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.