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. 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. 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. 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 ).
| CHD Type | Cost Considerations |
|---|---|
| Critical CHD (requiring intervention in first month of life), e.g., functionally univentricular heart, pulmonary atresia, transposition of the great arteries, total anomalous pulmonary venous return | Long length of stay common following uncomplicated surgery, typically 3–4 weeks, with at least 20% hospitalized 2 months or more ~25% with additional noncardiac anomalies and/or genetic abnormalities, with longer lengths of stay and more complicated interdisciplinary care—both raising annual and total costs. Planned and unplanned hospital admissions, reoperations, catheter interventions, and electrophysiologic abnormalities are common, increasing with the severity of the CHD. ~50% with neurodevelopmental challenges, increasing frequency and types of interdisciplinary follow-up care, also increasing direct and indirect costs (see later). Total lifelong costs are unknown but consist of both the direct costs of managing the cardiac condition and the indirect costs to the patient, family, and society. |
| Severe CHD (requiring intervention in infancy), e.g., tetralogy of Fallot, atrioventricular septal defect, ventricular septal defect | Syndromic associations are common, most often trisomy 21 (tetralogy of Fallot, ventricular septal defect, atrioventricular septal defect) and 22q11 deletion syndrome (tetralogy of Fallot, as well as common arterial trunk, ventricular septal defect with coarctation and interruption of the aortic arch—many of which are repaired in infancy). Children with these syndromes are affected by lifelong multisystem and neurodevelopmental abnormalities, also increasing direct and indirect costs (see later). Total lifelong costs are unknown but consist of both the direct costs of managing the cardiac condition and the indirect costs to the patient, family, and society. |
| Mild CHD (requiring intervention at >1 year of age if at all), e.g., small ventricular septal defect, atrial septal defect, subaortic membrane, bicuspid aortic valve | Total lifelong costs are unknown but consist of both the direct costs of managing the cardiac condition and the indirect costs to the patient, family, and society. |
These costs are greatest during infancy, the time when the most invasive procedures are performed. In 2009, mean costs for hospitalizations of infants with CHD in the United States were $36,000, compared with $24,000 for those 11 to 20 years old. In Australia, the inpatient costs over the first year of life averaged AUS$63,000 to $71,000, with a substantial portion due to readmissions. Importantly, these costs have also been rising over time. Despite no changes in acuity or hospital length of stay over time, surgical costs for infants with CHD at children’s hospitals increased by 50% from 2005 to 2011. In Canada, there was a 22% increase in overall inpatient costs for the CHD population from 2004 to 2012 even after accounting for inflation.
With the growing population of adults with CHD in developed countries, costs to care for this population are also becoming quite significant. Adults undergoing CHD surgery represent a unique population, and their costs and complications are greater than those of adults undergoing other cardiac surgical procedures, such as coronary artery bypass graft. In Canada, adults accounted for 46% of CHD inpatient costs in 2013, compared with 38% in 2004. During this period the annual costs for adults increased by approximately 4.5% per year. The presence of multiorgan comorbidities in adults with CHD contributes to these costs.
Factors Associated with Higher Medical Costs Among People Living with Congenital Heart Disease
There are many factors that may contribute to increased costs in children with CHD. Some factors may be modifiable, and these may represent an opportunity to provide excellent outcomes at reduced costs. Some are nonmodifiable, but understanding them might be useful for hospitals, payers (private and/or government funded), and policy makers in anticipating the costs of providing care.
Many of the factors associated with higher costs for persons with CHD are inherent to the disease or patient. Children born prematurely or with a genetic syndrome have greater costs of care over time, particularly within the first year of life. These children often have noncardiac complications or conditions that increase resource utilization and cost. Even for the child born at term and without a known genetic condition, the presence of comorbid conditions may result in increased costs. Other factors such as younger age and lower weight at the time of repair may increase costs, even after adjusting for the complexity of disease or surgery. It is unclear whether these factors are modifiable, as there may be extenuating circumstances requiring earlier surgical intervention. Finally, although race and ethnicity are not modifiable, there are conflicting findings as to whether they may be important factors in costs. The factors that influence costs for persons with CHD are likely to vary by country and may warrant country-specific studies.
For the patient with CHD undergoing surgery, there are many important factors associated with costs. Not surprisingly, increased surgical complexity is associated with higher costs. In 2006 to 2010, the median cost in the United States for the repair of an atrial septal defect was $25,499, whereas the median cost for a Norwood operation was $165,168. The care after surgery has an impact on costs as well. An important contributor to higher costs is the overall length of stay. For complex surgeries, reducing the length of stay may be difficult. Interventions such as earlier extubation and increased resource utilization in the earlier postoperative period after the repair of a tetralogy of Fallot did not result in shorter length of stay in an intensive care unit.
Complications such as renal failure, sepsis, need for extracorporeal membrane oxygenation, and need for mechanical ventilation are all associated with increased costs. Similarly, hospitalizations that result in mortality typically incur the greatest costs. However, costs of care are not restricted to the initial surgical encounter. Any efforts to reduce costs of the surgical encounter must be balanced with the impact these efforts may have on the likelihood of readmission, as readmission hospitalizations have been shown to be a key driver of increased costs for the CHD population.
Variation in Costs
The reported costs of care for patients with CHD vary remarkably between hospitals. For some procedures, the difference in costs between centers in the United States has been as high as ninefold. Differences in length of stay and complications following surgery can explain some of these differences but not all. For the most common and less complex surgeries, increasing the volume of cases appears to be associated with lower costs, consistent with economies of scale.
Opportunities to Reduce Costs
As costs have continued to increase over time, even after adjusting for inflation, hospitals and health systems have implemented efforts to contain or even reduce costs, particularly for resource-intense surgical encounters. For example, countries such as Mexico have promoted the regionalization of cardiac surgical care so as to reduce both costs and mortality, although this model is controversial in the United States. Dating as far back as the early 1980s, hospitals have investigated ways to reduce costs, such as by minimizing laboratory tests and “surveillance catheterizations” with some success. It may be important to target interventions in some lower-severity but highly prevalent types of CHD, as these contribute greatly to population costs. For example, “fast track” programs have been developed in various countries to accelerate the postoperative period for select cardiac operations such as closure of ventricular or atrial septal defects. Such focused cost-containment efforts have been shown to reduce costs by as much as 34% without increasing mortality or readmission rates. However, cost reduction should not be pursued if it comes with a greater risk of adverse outcomes. Although higher-volume hospitals may have lower costs and mortality, the fact remains that when other factors are controlled, higher costs may be associated with lower mortality. It is important to weigh the balance of any cost-containment measures with potential impacts on outcomes; a reduction in costs that is achieved by sacrificing quality and increasing adverse outcomes will diminish the value of the care delivered.
Costs to Patients, Families, and Society (See Also Box 14.1 )
An often ignored but likewise important cost of care for the patient with CHD is the financial burden and time costs borne by the families of affected children and the patients themselves. These financial burdens are in addition to the numerous emotional, psychosocial, and psychologic aspects of growing up with CHD. Frequent doctor visits, extended hospitalizations, and intricate care needs place a financial and emotional toll on families. Many caregivers may give up employment in order to provide care for a fragile child with CHD or may add a second job in order to meet the associated financial needs. The greatest nonmedical costs to families of children with CHD include lost income, the costs of transportation, and the need to care for siblings.
Patient and Society
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Neurodevelopmental care (e.g., autism, attention deficit hyperactivity disorder, disorders of executive function)
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Speech, physical, and occupational therapy, including special education
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Costs associated with managing conditions associated with CHD, such as premature dementia, obesity, hearing loss, and infections
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Additional specialty care
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Additional immunizations
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Less financially beneficial employment opportunities for adults with CHD
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Accommodations for disabilities
Family and Society
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Missed work days for parents and family during hospitalizations and doctor visits
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Additional costs during hospitalizations (food, parking, etc.)
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Time spent with paperwork (insurance claims, individual educational plan maintenance, etc.)
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Daycare and other costs for siblings of children with CHD during hospitalizations and outpatient care
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Lost opportunity costs for improved income and job satisfaction if changing employment is limited by insurance tied to job (United States)
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Higher insurance premiums (United States)
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Lifelong supportive care
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