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September 15, 2026Cardiology in the YoungOpen Access

13th Annual Scientific Sessions of the Cardiac Neurodevelopmental Outcome Collaborative

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Population

Children and young adults with congenital heart disease and their families participating in various quality…

Comparison

Implementation of quality improvement… vs Pre-intervention baseline practices or standard…

Design

Other

Key result

Implementation of a delivery risk classification system increased the rate of delivery room maternal-infant bonding from 34% to 55% in newborns with prenatally diagnosed congenital heart disease.

Discussion

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Overview

Supports risk classification to boost bonding in fetal CHD; hypothesis-generating and requires prospective validation before practice change.

Key Points

  • To assess consistency between centralized Cardiac Neurodevelopmental Outcome Collaborative (CNOC) data dictionary definitions and diagnostic entries documented during institutional clinical follow-up visits.
  • Reviewed diagnostic terminology compatibility during pediatric neurodevelopmental clinic follow-up visits within a participating collaborative center.
  • Compared centralized registry data dictionary options against institutional electronic health record documentation fields.
  • Identified systematic discrepancies between standardized CNOC data dictionary diagnoses and institutional clinical electronic options.
  • Demonstrated coding misalignment that impedes uniform multi-institutional tracking of neurodevelopmental outcomes.

Study Design

Type

Cohort (n=210)

Multicenter

No

Structured PICO

P
Population
210 newborns with prenatally diagnosed congenital heart disease evaluated in a pre- and post-intervention cohort to assess delivery room maternal-infant bonding.
I
Intervention
Implementation of quality improvement initiatives including integrated psychology services, standardized EMR diagnosis tracking, safe handling protocols, chylous diet education, EMR-based risk stratification, delivery room maternal-infant bonding, and education liaison referrals.
C
Comparator
Pre-intervention baseline practices or standard care.
O
Outcome
Process measures including protocol adherence, referral rates, EMR report accuracy, and patient/family satisfaction.

Main Result

Absolute Event Rate: 55% vs 34%

p-value: p=0.056

Quality improvement initiatives across pediatric cardiology centers demonstrate feasibility and effectiveness in enhancing neurodevelopmental care, psychosocial support, and standardized data tracking for patients with congenital heart disease.

Limitations

  • Retrospective baseline data collection
  • Single-center study
  • Small sample sizes in pilot phases
  • Single-center implementations for individual projects
  • Reliance on retrospective data for some baselines
  • Need for longer-term data collection to quantify impact

Cite This Study

A 2026 study conducted a cohort in Prenatally diagnosed congenital heart disease (n=210). Delivery risk classification system vs. Pre-intervention standard care was evaluated on Delivery room maternal-infant bonding (maternal holding or skin-to-skin care) (p=0.056). Implementation of a delivery risk classification system increased the rate of delivery room maternal-infant bonding from 34% to 55% in newborns with prenatally diagnosed congenital heart disease.

synapsesocial.com/papers/6aa9016aeed42882c1fc17f2https://doi.org/10.1017/s104795112611230x
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