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Andersons pediatric cardiology 302

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Abstract In developed countries, the last few decades have heralded many advances in the diagnosis and management of congenital heart disease (CHD) However, the advances in modalities to diagnose and manage CHD come with significant financial implications In a world with fixed resources, the costs of managing CHD on the macroeconomic scale cannot be ignored This chapter reviews what is currently known regarding such costs First, there are the costs to the medical system: labor costs, equipment costs, drug costs, and more Second, there is the cost to patients and their families: beyond paying for medical care, families face financial hurdles to care for a loved one with CHD that include travel and time costs in seeking care and the lost earnings and other opportunities foregone due to caregiving responsibilities Finally, “cost” in the broadest sense may also include the psychosocial and health outcomes of the patient and family All of these are important costs that must be considered when providing care for patients with CHD Keywords Congenital heart disease; Costs; Value In developed countries, the last few decades have heralded many advances in the diagnosis and management of congenital heart disease (CHD) These include surgery in neonates and infants; the establishment of pediatric cardiac intensive care; nursing and cardiac anesthesia; subspecialization in interventional catheterization, imaging, electrophysiology, heart failure, and transplantation; and the treatment of adults with CHD Economically advantaged countries have the tools and knowledge available to significantly improve the lives of patients with complex CHD However, the advances in modalities to diagnose and manage CHD come with significant financial implications In a world with fixed resources, the costs of managing CHD on the macroeconomic scale cannot be ignored First, there are the costs to the medical system: labor costs, equipment costs, drug costs, and more Second, there is the cost to patients and their families Beyond paying for medical care, families face financial hurdles in caring for a loved one with CHD that include travel and time costs in seeking care and the lost earnings and other opportunities foregone owing to caregiving responsibilities All of that is in addition to lost earnings for adults with CHD who have less occupational success resulting from the long-term complications of their disorder and associated treatments Third, “cost” in the broadest sense may also include the psychosocial and health outcomes of the patient and his or her family In this chapter we focus on the costs of providing medical care, keeping in mind that the actual charges for care are multifactorial and can vary significantly between institutions.1 We also touch upon the indirect costs to the patient, family, and health care system The tables list many of these direct and indirect costs involving the patient, family, health care system, and society Although this chapter focuses on the financial implications of CHD, it does not delve into what may be of even greater importance: value Value, or the outcome generated for a certain cost, is much more difficult to capture.2 For a fixed outcome, value clearly increases as cost decreases However, outcomes are not always fixed, may be variably defined (e.g., survival, length of stay, or duration vs quality of life), and may change as costs change Therefore it is important to keep in mind that lower costs do not necessarily translate to increased value Medical Costs Costs of Direct Medical Care (Fig 14.1, Table 14.1) Because surgery and catheter interventions are integral components of care for individuals with CHD, it is not surprising that the costs of medical care are high for this population across the life span.1 In fact, among persons with birth defect–related hospitalizations, those with cardiovascular defects accounted for $6.1 billion in overall hospitalization costs in the United States in 2013, comprising 27% of total birth defect–associated hospitalization costs (Fig 14.1).3

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