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Lifetime Burden of Adult Congenital Heart Disease in the USA Using a Microsimulation Model

Abstract

Congenital heart defects (CHD) represent a growing burden of illness among adults. We estimated the lifetime health, education, labor, and social outcomes of adults with CHD in the USA using the Future Adult Model, a dynamic microsimulation model that has been used to study the lifetime impacts of a variety of chronic diseases. We simulated a cohort of adult heads of households > 25 years old derived from the Panel Survey of Income Dynamics who reported a childhood heart problem as a proxy for CHD and calculated life expectancy, disability-free and quality-adjusted life years, lifetime earnings, education attainment, employment, development of chronic disease, medical spending, and disability insurance claiming status. Total burden of disease was estimated by comparing to a healthy cohort with no childhood heart problem. Eighty-seven individuals reporting a childhood heart problem were identified from the PSID and were used to generate the synthetic cohort simulated in the model. Life expectancy, disability-free, quality-adjusted, and discounted quality-adjusted life years were an average 4.6, 6.7, 5.3, and 1.4 years lower than in healthy adults. Lung disease, cancer, and severe mental distress were more common compared to healthy individuals. The CHD cohort earned $237,800 less in lifetime earnings and incurred higher average total medical spend by $66,600 compared to healthy individuals. Compared to healthy adults, the total burden of CHD is over $500K per adult. Despite being among the healthiest adults with CHD, there are significant decrements in life expectancy, employment, and lifetime earnings, with concomitant increases in medical spend.

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Acknowledgements

CLG conceived the study design and analysis and wrote the manuscript. HZ and YW performed all statistical analyses. BT, DPG, and RGW each provided input on additional statistical analyses, clinical considerations, and critical editorial feedback on the manuscript. DG is a consultant to Precision Health Economics and holds equity (< 1%) in its parent company; and reports personal fees or honoraria from the Aspen Institute, ACADIA Pharmaceuticals, Amgen, and Celgene outside this study. We would like to acknowledge Hanke Heun-Johnson for her comments on the revision. All other authors report no other disclosures.

Funding

Research reported in this publication was supported by the National Institute on Aging of the National Institutes of Health under Award Number P30AG024968, which funds the Roybal Center for Health Policy Simulation, part of the Leonard D. Schaeffer Center for Health Policy & Economics at the University of Southern California. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health or the Schaeffer Center.”

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Contributions

CLG conceived the study design and analysis and wrote the manuscript. HZ and YW performed all statistical analyses. BT, DPG, and RGW each provided significant input on additional statistical analyses, clinical considerations, and critical editorial feedback on the manuscript.

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Correspondence to Cynthia L. Gong.

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Conflict of interest

DPG is a consultant to Precision Health Economics and holds equity (< 1%) in its parent company; and reports personal fees or honoraria from the Aspen Institute, ACADIA Pharmaceuticals, Amgen, and Celgene outside this study. All other authors report no other disclosures.

Ethics Approval

IRB approved (USC IRB #UP-10-00125). Research reported in this publication was supported by the National Institute on Aging of the National Institutes of Health under Award Number P30AG024968, which funds the Roybal Center for Health Policy Simulation, part of the Leonard D. Schaeffer Center for Health Policy & Economics at the University of Southern California. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health or the Schaeffer Center.” All procedures performed in studies involving human participants were in accordance with the ethical standards of the USC IRB (IRB #UP-10-00125) and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards. This article does not contain any studies with animals performed by any of the authors.

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Gong, C.L., Zhao, H., Wei, Y. et al. Lifetime Burden of Adult Congenital Heart Disease in the USA Using a Microsimulation Model. Pediatr Cardiol 41, 1515–1525 (2020). https://doi.org/10.1007/s00246-020-02409-9

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  • DOI: https://doi.org/10.1007/s00246-020-02409-9

Keywords

  • Congenital heart defects
  • Microsimulation
  • Burden of illness
  • Health policy
  • Health services research