Andersons pediatric cardiology 303

FIG 14.1 Weighted estimated median cost and interquartile range of birth defect–associated hospitalizations by specific birth defect, National Inpatient Sample, 2013 Preterm birth was defined as less than 37 weeks’ gestational age (Modified from Arth AC, Tinker SC, Simeone RM, et al., Inpatient hospitalization costs associated with birth defects among persons of all ages—United States, 2013 MMWR Morb Mortal Wkly Rep 2017;66[2]:41–46.) Table 14.1 Cost Considerations Across the Life Span According to the Severity of Congenital Heart Disease CHD Type Cost Considerations Critical CHD (requiring intervention in Long length of stay common following uncomplicated surgery, first month of life), e.g., functionally typically 3–4 weeks, with at least 20% hospitalized 2 months or univentricular heart, pulmonary atresia, more transposition of the great arteries, total ~25% with additional noncardiac anomalies and/or genetic anomalous pulmonary venous return 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 Syndromic associations are common, most often trisomy 21 infancy), e.g., tetralogy of Fallot, (tetralogy of Fallot, ventricular septal defect, atrioventricular septal atrioventricular septal defect, defect) and 22q11 deletion syndrome (tetralogy of Fallot, as well as ventricular septal defect 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 Total lifelong costs are unknown but consist of both the direct costs of year of age if at all), e.g., small managing the cardiac condition and the indirect costs to the patient, ventricular septal defect, atrial septal family, and society defect, subaortic membrane, bicuspid aortic valve CHD, Congenital heart disease 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.4 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.5 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 2011.6 In Canada, there was a 22% increase in overall inpatient costs for the CHD population from 2004 to 2012 even after accounting for inflation.7 With the growing population of adults with CHD in developed countries, costs to care for this population are also becoming quite significant.8,9 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.10 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.7 The presence of multiorgan comorbidities in adults with CHD contributes to these costs.11 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.12,13 These children often have noncardiac complications or conditions that increase resource utilization and cost.14 Even for the child born at term and without a known genetic condition, the presence of comorbid conditions may result in increased costs.15 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.12 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.13,16,17 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