Author + information
- Roberta G. Williams, MD∗ ()
- Department of Pediatrics, Keck School of Medicine at the University of Southern California, Children's Hospital Los Angeles, Los Angeles, California
- ↵∗Reprint requests and correspondence:
Dr. Roberta G. Williams, Children’s Hospital Los Angeles, 4650 Sunset Boulevard, MS#34, Los Angeles, California 90027.
No one should be surprised that, over the past 3 decades, remarkable gains have been made in the survival of patients with congenital heart disease (CHD) because the field of cardiology has been responding to the emergence of increasing numbers of adult patients with complex heart disease. Many of us have been in the trenches as new surgical techniques were developed and widely adopted, perioperative care became increasingly refined, and prenatal diagnosis became available. Because these innovations have been lesion-specific, the surviving population looks different in each decade. Examining the coincidental timing of these demographic and environmental changes can be helpful in planning future resource requirements.
The paper by Chamberlain et al. (1) in this issue of the Journal is a step in that direction. It provides information on trends in inpatient health care resource utilization for pediatric patients with CHD over a 28-year period. The authors performed a retrospective, epidemiological analysis of the California Office of Statewide Health Planning and Development database from 1983 to 2011 and identified regional pediatric cardiology specialty care centers by California’s Title V program. Increasing regionalization of surgical discharges was demonstrated, with discharges from specialty centers increasing from 61% in 1983 to 96% in 2011. Nonsurgical admissions of patients with complex CHD were less well regionalized, with 71% of discharges from specialty centers in 2011. During the study period, the death rate declined from 51 to 23 deaths per 100,000 total population of children, making a strong case for a causal relationship between the development of highly specialized resources and surgical survival for the most complex cases of CHD. As evidence of the increasing complexity of CHD in the population, the number of discharges increased only a little more than 5% between 1983 and 2011, but the total bed-days nearly doubled from 35,753 to 71,278, and the median length of stay for both surgical and nonsurgical discharges increased by 1 day. These findings make the gains in survival even more impressive but also suggest a sobering cost impact.
Chang and Klitzner (2) studied CHD surgical discharges in California from 1995 to 1997 and calculated that theoretical regionalization would result in reduction of surgical mortality from 5.34% to 4.08%, which is, in fact, exactly the overall surgical and medical discharge mortality rate shown in the study by Chamberlain et al. (1). Other studies have found a substantial reduction in risk-adjusted mortality at high-volume CHD centers, supporting the concept of regionalization (3–5). Gurvitz et al. (6) examined California’s CHD admissions from 2000 to 2002 and found that care at a regional center expanded from 70% in 12 hospitals in adolescence to 44.8% in 25 hospitals during adulthood, coinciding with a doubling of emergency admissions. The culmination of these studies is that regionalization of pediatric CHD services in California did indeed result in improved survival of patients with increasingly complex CHD and that this advantage is degraded with transition to adult care.
During the span of the study by Chamberlain et al. (1), discharges of Hispanic patients doubled (from 24% to 48%) and discharges of non-Hispanic white patients dropped by one-half. It will be interesting to explore the root causes for this demographic shift. California underwent a substantial population growth during this time (7), from 25.4 million in 1983 to 37.3 million in 2010. The Hispanic population grew in absolute size and proportion, and in 2010 represented 38.4% of the population. In addition, access to care improved when, in 1988 and 1990, Medi-Cal (the state Medicaid program) expanded coverage of pregnant women and children. The dramatic increase in admissions of Hispanic patients may be the result of multiple factors such as immigration, access to prenatal services, and religious views against termination of pregnancy. Although the proportion of non-Hispanic white subjects in the state population decreased from ∼65% in 1983 to 39.7% in 2011, the absolute number dropped only slightly (8), implicating other factors such as declining pregnancy rates or pregnancy termination.
A recent study (9) of adolescents and young adults with CHD in California found that hospitalization costs and length of stay decreased in young adulthood as the proportion of admissions shifted to more medical-based and fewer surgical admissions, suggesting that the natural history of CHD is an important driver of resource utilization over the lifespan. Because each decade has brought innovations that have increased survival of the marginally viable, it is likely that the pattern of health service utilization will be different when today’s child with CHD becomes an adult. It is also noteworthy that the percentage of pediatric patients covered by public funding increased from 50% to 66% during this study (1), which puts some financial pressure on high-resource programs that must provide costly services and highlights the vulnerability of these programs to changes in Title V funding.
It would be shortsighted to ignore the fact that health care resources are increasingly constrained and that CHD is only 1 of many conditions experiencing increased survival and competing for scarce resources. Recent cohorts of patients with CHD will require increasingly more services throughout their lives, and it would be unconscionable to invest heavily in the survival of these children and not provide the resources to maintain their functional state throughout life. If we are to be good stewards for this complex and vulnerable CHD population, we must also strive to find the most efficient and low-cost strategies to provide the best value for the patient and to society. This goal requires ongoing efforts to examine management strategies that provide the best health outcomes over the lifetime and to continue developing new strategies that simplify care and its cost. Development of expensive technology and systems of care brought us to this era of improved survival (10), but innovation of streamlined care will be necessary to maintain the health of these more fragile patients. Considering the projected cost of these patients in their mid- to late-adult years, any strategies that can improve health and delay the cost of organ transplant or implantable devices will create significant value in return on societal investment.
What have we learned? Regionalization of care, access to care, and medical developments have made staggering improvements in survival of the more severe forms of CHD, leading to a sizable population, the likes of which the world has never seen. This is both a reason for pride and a burden of responsibility to provide effective, sustainable care for these patients.
↵∗ Editorials published in the Journal of the American College of Cardiology reflect the views of the authors and do not necessarily represent the views of JACC or the American College of Cardiology.
Dr. Williams has reported that she has no relationships relevant to the contents of this paper to disclose.
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- ↵United States Census Bureau. Current Population Survey: 2011. Available at: https://www.census.gov/newsroom/releases/archives/population/cb12-tps83.html. Accessed May 15, 2015.
- ↵United States Census Bureau. Population Estimates. 1980s: State Tables. Available at: http://www.census.gov/popest/data/historical/1980s/state.html. Accessed May 15, 2015.