Project Details
Description
Project Summary/Abstract
Congenital heart diseases (CHD) affect nearly 1% of children born in the United States (US), with many of
them requiring heart surgery to avoid mortality or significant morbidity. Advances in the surgical management
of CHDs have led to a growing population of CHD survivors, with now over 2 million persons with CHD in the
United States, more than half of whom are adults. While survival to adulthood is now excellent for CHD
patients, for many CHD types the mortality has simply shifted a few decades and now occurs in adulthood.
Moreover, with age, these patients are continuously exposed to additional cardiovascular and non-
cardiovascular morbidities along with the general population, and risk for these morbidities is likely higher as
they are expected to create synergistic injury leading to additional premature mortality. Importantly, little is
known concerning educational attainment, employment, and social relationships among this growing
population. Understanding long-term outcomes is important for identifying opportunities for intervention and
planning for health care services in this population with high resource utilization.
Our project aims to fill important gaps related to the long-term outcomes for patients with CHD by linking the
Pediatric Cardiac Care Consortium (PCCC), a large US-based registry for interventions of CHDs, with the
National Death Index (NDI). This linkage allowed us to constitute a cohort that describes the long-term
mortality of patients with an operated CHD. Since the PCCC registry is unparalleled in its size and scope, this
approach provides the most powerful data source in the US to examine the trajectory of outcomes for patients
operated for CHD now reaching adult age. However, besides mortality another important outcome for patients
surviving various interventions for CHD is the development of end stage cardiac failure or pulmonary
hypertension resulting in the need for organ transplantation. To address this limitation, we supplemented this
dataset with linkage with the Organ Procurement and Transplantation Network (OPTN) research registry to
obtain information regarding listing for transplant and organ transplants in the same cohort. In the next phase
of our project, both death and transplant data will be updated through 2021 to assess characteristics related to
survival and transplant within this aging cohort. In addition, as part of the continuation of our project we will
survey patients and their siblings to determine the effects of the disease on the long-term medical,
neurocognitive, and psychosocial outcomes for survivors of CHD compared to their siblings and the general
population and to identify relevant prognostic factors that may be associated with those outcomes
Completion of this study will provide a realistic and comprehensive view of expected outcomes after congenital
heart surgery. This information will be useful to all relevant stake holders for the population of CHD and will
promote engagement of patients and their families, care providers, health care administrators and public health
officers to improve outcomes in this vulnerable population.
Status | Finished |
---|---|
Effective start/end date | 4/1/14 → 7/31/23 |
Funding
- National Heart, Lung, and Blood Institute: $4,375,075.00
- National Heart, Lung, and Blood Institute: $658,169.00
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