Comorbidity, health care utilization and costs in US adults with congenital heart disease: A population based study

Doctor's Name: 
Anushree Agarwal
University of California, San Francisco

Collaboratively awarded through the CHF and AHA Congenital Heart Defect Research Awards

(Total Grant Amount $154,000; CHF portion = $83,158.38)

Adult congenital heart disease (ACHD) population is rapidly growing worldwide due to advances in treatment. We have begun to identify that there is a huge gap in developing a useful structure and process of care for ACHD patients. This is due to the lack of knowledge about the rate of comorbidities and health care utilization in these patients. These are necessary to improve their quality of care and outcomes. We believe that obtaining a population based estimate of the burden of medical diseases and use of health care will help the policymakers and health care services to allocate the limited resources effectively. Thus we will use a large outpatient claims database (MarketScan) that currently has over 100,000 ACHD patients over 4 year period, to help obtain these estimates.

Our research is aimed at understanding the level of health care utilization and costs among the growing ACHD population. In particular, we are trying to determine the rates of clinical outcomes like heart attack, heart failure, in-patient death, cardiac and non-cardiac procedures, etc and also understand how often these patients use the health care system like annual outpatient, emergency room and inpatient visits as well as their associated costs. We will also determine how often they have adult onset conditions like hypertension, stroke, etc. and if their presence is associated with worse outcomes. This will generate the first US population based estimates of comorbidities, health care utilization and costs, which can then be used to allocate resources appropriately for ACHD clinics.

The population-based estimates that we will generate will provide a platform for future research ideas in this area. For example, if we find that stroke is more common, occurs at a younger age and associated with worse outcomes in ACHD patients compared to general population, then further research to identify the risk factors or other biological explanations for this difference will be sought. This can also help generate individualized preventive and management strategies taking into account the specific needs of ACHD population. Thus, this and future studies will provide data to help develop guidelines for practicing cost-efficient evidence-based medicine in all domains of ACHD care, with the long-term goal of reducing their overall and cardiac disease burden and hence improve outcomes.

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