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From numbers to guidelines
Ariane J Marelli1, Michelle Gurvitz
1McGill Adult Unit for Congenital Heart Disease (MAUDE Unit), McGill University Health Center, Montreal, Quebec, Canada. ariane.marelli@mcgill.ca
Insights
Advances in adult congenital heart disease (ACHD) care are improving survival, but gaps in care persist. This review highlights the need for improved health services and a trained workforce to manage lifelong CHD conditions effectively.
Area of Science:
- Cardiology
- Public Health
- Health Services Research
Background:
- Pediatric cardiology advances have shifted congenital heart disease (CHD) demographics towards adults.
- Adult CHD (ACHD) patients exhibit high healthcare utilization but face significant care gaps.
- Lifelong management is crucial for complex CHD conditions.
Purpose of the Study:
- To review the evolving epidemiology of CHD and its impact on healthcare.
- To identify components of quality improvement for ACHD care.
- To discuss workforce needs and optimal healthcare systems for ACHD patients.
Main Methods:
- Review of current literature and newly published guidelines for adult CHD management.
- Analysis of health services utilization and delivery trends in ACHD.
- Examination of quality of care indexes (structure, process, outcome).
Main Results:
- ACHD patients have high healthcare utilization rates.
- Significant gaps exist in the lifelong care of ACHD patients.
- There is a need for a specialized cardiology workforce trained in ACHD.
Conclusions:
- Quality improvement initiatives are essential for ACHD care.
- Newly published guidelines provide a framework for managing adult CHD.
- Optimized healthcare systems and a skilled workforce are critical for delivering effective ACHD care.
Abstract:
Advances in pediatric cardiology and cardiac surgery have resulted in a change in the mortality, prevalence, and age distribution of patients with congenital heart disease (CHD). In this chapter, we review the changing epidemiology of CHD and the impact of these trends on health services utilization and delivery in this population. We demonstrate not only that adult CHD (ACHD) patients have high utilization rates but also that care gaps exist where disease is expected to be lifelong. We outline the components of quality improvement for the care of ACHD patients. We review the newly published guidelines for the management of CHD conditions in adults, anchoring them to structure, process, and outcome indexes of quality of care. We highlight the manpower needs and the importance of an appropriately trained cardiology workforce to provide ACHD care. Finally, we review recommended health care systems ideally suited to deliver care to this population.
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