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A detailed profiling study from the national Australian Congenital Heart Disease registry: rationale and design

Tanya Badal1,2,3, Calum Nicholson1,2,3, Julian Ayer1,4

  • 1University of Sydney, Camperdown, NSW, 2050, Australia.

International Journal of Cardiology. Congenital Heart Disease
|July 3, 2025
PubMed

Insights

This study assessed the medical, psychological, and social burdens of Congenital Heart Disease (CHD) in Australian patients and carers. Findings will inform comprehensive care strategies for the growing CHD population.

Area of Science:

  • Cardiology
  • Public Health
  • Patient Outcomes

Background:

  • Significant gaps exist in the care of children and adults with Congenital Heart Disease (CHD).
  • The Australian Study of the Burden and Outcomes of CHD addresses these gaps by assessing patient and carer experiences.
  • Healthcare utilization patterns in CHD patients require detailed examination.

Purpose of the Study:

  • To comprehensively profile the medical, psychological, social, and economic burdens faced by Australian CHD patients and their carers.
  • To provide a detailed account of healthcare utilization among individuals with CHD.
  • To inform improved care strategies and support systems for the growing CHD population in Australia.

Main Methods:

  • A random sample of 68,214 patients aged ≥5 years was extracted from the National Australian CHD Registry.
  • Patients were selected from four major CHD centers, stratified by gender, CHD complexity, and rural/remote location.
  • In-person study visits included physical assessments and surveys on health, neurodevelopment, and quality of life for patients and carers.

Main Results:

  • 1,911 out of 6,726 contacted patients (28%) consented to participate.
  • A total of 1,658 participants completed at least one study activity, with a high survey completion rate (99.5%).
  • Respondents were older and had a higher proportion of severe CHD compared to non-respondents, indicating potential biases in the study sample.

Conclusions:

  • This multi-site study provides the first comprehensive profile of burdens and outcomes for over 1600 Australian CHD patients.
  • The findings highlight the multifaceted challenges faced by individuals with CHD and their support networks.
  • This research is crucial for developing targeted interventions and enhancing the quality of life for the expanding CHD population.
Abstract

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