Author + information
- Received April 9, 2015
- Accepted April 21, 2015
- Published online July 7, 2015.
- Lisa J. Chamberlain, MD, MPH∗∗ (, )
- Susan M. Fernandes, LPD, PAC†,‡,
- Olga Saynina, MA, MBA§,
- Stafford Grady, MD†,
- Lee Sanders, MD, MPH∗,§,
- Kelly Staves, BA§ and
- Paul H. Wise, MD§,‖
- ∗Department of Pediatrics, Division of General Pediatrics, Stanford University School of Medicine, Palo Alto, California
- †Department of Pediatrics, Division of Cardiology, Stanford University School of Medicine, Palo Alto, California
- ‡Department of Medicine, Division of Cardiovascular Medicine, Stanford University School of Medicine, Palo Alto, California
- §Department of Pediatrics, Center for Policy, Outcomes and Prevention, Stanford University School of Medicine, Palo Alto, California
- ‖Department of Pediatrics, Division of Neonatology, Stanford University School of Medicine, Palo Alto, California
- ↵∗Reprint requests and correspondence to:
Dr. Lisa J. Chamberlain, Stanford University, Department of Pediatrics, 1265 Welch Road, MSOB x240, Stanford, California 94305.
Background American Academy of Pediatrics guidelines emphasize regionalized systems of care for pediatric chronic illness. There remains a paucity of information on the status of regionalized systems of care for pediatric congenital heart disease (CHD).
Objectives This study evaluated variations in use of pediatric cardiology specialty care centers (PCSCC) for pediatric patients with CHD in California between 1983 and 2011.
Methods We performed a retrospective, total population analysis of pediatric CHD patients using the California Office of Statewide Health Planning and Development unmasked database. PCSCCs were identified by California's Title V program.
Results There were 164,310 discharges meeting inclusion criterion. Discharges from PCSCCs grew from 58% to 88% between 1983 and 2011. Regionalized care was highest for surgical (96%) versus nonsurgical (71%) admissions. Admissions with a public payer increased from 42% (1983) to 61% (2011). Total bed days nearly doubled, and median length of stay increased from 2 to 3 days (nonspecialty care) and from 4 to 5 days (specialty care). There was a decrease in the pediatric CHD in-hospital death rate from 5.1 to 2.3 per 100,000 between 1983 and 2011, and a shift toward a larger percent of deaths occurring in the newborn period.
Conclusions California’s inpatient regionalized specialty care of pediatric CHD has increased substantially since 1983, especially for surgical CHD discharges. The death rate has decreased, the number of bed days has increased, and a large proportion of these discharges now have public payers. Health care reform efforts must consider these shifts while protecting advances in regionalization of pediatric CHD care.
Access to high-quality care for children with serious chronic illness depends upon regionalized systems of care (1–3). Pediatric heart surgery has lower mortality rates at high-volume hospitals (4–7), especially for more complex cases (8), and outcomes are improved for mothers, infants, and children with heart disease when they are cared for in a regional network of cardiac providers (9). Theoretical modeling of increased regionalized care for children with congenital heart disease (CHD) predicted a decrease in mortality from 5.3% to 4% (10). The American Academy of Pediatrics’ “Guidelines for Pediatric Cardiovascular Centers” states that designated centers with specific pediatric capacities should strive to participate in regional health care networks (11).
Pediatric CHD is a broad category encompassing a wide range of conditions, and hospital mortality rates of CHD repair vary: 1% for simple forms and up to 5% for more complex lesions (12). Indeed, in the most complex cases, mortality rates range from 26% to 36% (13) and complex lesions such as hypoplastic left heart mortality can be as high as 21% to 40% on the basis of distance to specialty care center, prenatal diagnosis, and hospital CHD volume (14).
During the last 30 years, medical and surgical advances have improved outcomes for children born with CHD, leading to an increasing number of survivors requiring an ongoing provision of services. In addition, reducing health disparities for pediatric and adult CHD is a high priority. Health disparities are described in patients with CHD (15,16), including a study revealing reduced survival among non-white children born with CHD (17). Access to care for CHD has been shown to vary between whites and non-whites (15) and on the basis of type of insurance (18).
Fundamental to many of these questions, and what remains unexamined, is how overall use of regional centers for pediatric cardiac care has evolved in the last 30 years, a period which has seen expansion of public health insurance programs and the advent of managed care models. As the United States embarks on a new era of care brought about by the Affordable Care Act, clarity in understanding the baseline of access to care for vulnerable pediatric patients is critical. Therefore, we sought to understand the use of regional pediatric cardiology specialty care centers (PCSCCs) during the last 28 years in California between 1983 and 2011.
A retrospective analysis of pediatric hospitalizations for children aged 0 to 18 years in California during the period 1983 to 2011 was performed. The Institutional Review Board at Stanford University and the State of California Committee for the Protection of Human Subjects reviewed and approved this study.
Inclusion and exclusion criteria
The analysis included children whose discharges included codes for pediatric congenital heart disease diagnoses (745.xx-747.xx) and/or cardiac surgical procedural codes (35.xx, 37.xx [except 37.0x], 39.0x, 39.21, 39.54, 39.59, 39.61, 39.62, 39.63, 39.64, and 36.99). If an individual had > 1 CHD or cardiac surgical procedural codes, we included up to the first 5.
We extrapolated from the work performed on categorization of CHD in adults by Warnes et al. (19), and defined CHD as either simple (i.e., isolated atrial or ventricular septal defects or valvular disease) or moderate/complex. Simple CHD was then excluded from the nonsurgical group due to the perceived low risk of morbidity and mortality after repair. Moderate to complex CHD diagnoses, along with all surgical cases, remained in the sample. We further excluded newborns who died at nonspecialty centers within the first 2 days of life and the newborns born in a nonspecialty care center who were transferred within the first 3 days of life (vaginal deliveries) and 7 days of life (Cesarean deliveries). Finally, we excluded cases with primary codes indicating admission for pregnancy, trauma, and residence in a non-California zip code, the methodology of which has been described in prior work (20–22). This generated 531,772 pediatric CHD discharges, with 164,310 meeting inclusion criteria (Figure 1).
Data sources and definitions
This analysis used the unmasked Patient Discharge Database from the Office of Statewide Health Planning and Development (OSHPD), which contains information on discharges from all licensed nonfederal acute care hospitals in California. Unmasked OSPHD discharge files contain age, race/ethnicity, sex, county of residence, patient zip code, insurance status, and clinical information such as discharge diagnoses, procedures, disposition of patient, external cause of injury, source of admission, and length of stay (LOS). Each discharge file documents the principal diagnosis and up to 24 secondary diagnoses, all coded according to the International Classification of Disease-9th Clinical Modification. We combined race and ethnicity variables to create categories as White non-Hispanic, Black non-Hispanic, Hispanic, Asian/Pacific Islander non-Hispanic, and other non-Hispanic categories. Payer status was categorized as public insurance (Medicare, Medi-Cal [California’s Medicaid program], County Indigent Programs, State Children’s Health Insurance Program [SCHIP], and Title V programs), private insurance (including private health maintenance organizations and other managed care plans), and other (self-pay and other payer).
The designation of a specialty care center was on the basis of whether it was recognized by the California Title V program, California Children’s Services (CCS), as a pediatric cardiology specialty care center. Accreditation by CCS as a pediatric cardiology center reflects capacity to provide comprehensive, coordinated pediatric cardiac care. As of May 2013, 16 hospitals in California had CCS designation as a regional PCSCC (23), including 7 children’s hospitals. We retrospectively verified site accreditation during the 28 years of the study and confirmed that all except 1 (Pasadena Hospital) were accredited throughout our study period; for Pasadena Hospital, only the admissions during the accredited period were considered as being treated in a specialty care center. Total bed days represent the number of discharges with a particular LOS multiplied by that LOS, then summed over all bed days. Discharges occurring on the same day as admission were considered to have an LOS of 1 day. Child population data were obtained from the United States Census Bureau (24–26) Child poverty rates were obtained from the Current Population Survey (27). Public Insurance Coverage rates were pulled from the U.S. Census Bureau's Current Population Survey Annual Social and Economic Supplement (28,29).
Chi-square test analysis was used to assess differences between proportions and a value of p < 0.05 was deemed statistically significant. All analyses were performed using SAS Version 9.1 (SAS Institute Inc., Cary, North Carolina) statistical software.
There were 531,772 pediatric CHD discharges in California during the 28 years spanning from 1983 to 2011, with 164,310 meeting inclusion criterions. Of these, 114,706 (70%) were discharges associated with a surgical procedure and 49,604 (30%) were associated with hospitalization without surgical intervention (Figure 1). Overall, children in this population were predominantly young (73% were <5 years of age), male (55%), and covered by a public payer (51%). Fifty-eight percent lived in a zip code with a median income between 2 and 4 times the federal poverty level (FPL), and 27% lived in a zip code with a median income <2 times the FPL (Table 1). White, non-Hispanic children accounted for 42% of this population, whereas Hispanic children accounted for 38%. This overarching demographic portrait combining all patients seen during 28 years obscures considerable shifts in California’s demographics: between 1983 and 2011 the percent of discharges covered by a public payer increased from 42% to 61% (p < 0.0001) and the percent of discharges identified as Hispanic rose from 24% to 48% (p < 0.0001).
The regionalization of pediatric CHD care increased significantly during the period of study. Pediatric CHD cases discharged from a PCSCC increased from 58% in 1983 to 88% in 2011 (p < 0.0001) (Central Illustration). Surgical cases experienced higher rates of regionalization, increasing from 61% to 96% in 1983 and 2011, respectively (p < 0.0001). For nonsurgical discharges, PCSCC usage increased from 48% in 1983 to 71% in 2011 (p < 0.0001). Rates of regionalized care increased until 2002 when a plateau occurred for both surgical and nonsurgical discharges.
To further examine hospitalization by children with CHD, we then examined the use of inpatient care as measured by bed days (Figure 2). During the study period there was increased demand on inpatient care with total bed days increasing from 35,753 days in 1983 to 71,278 in 2011—an increase of 199%. When standardized for child population growth, the bed days increased from 591 of 100,000 (1983) to 769 of 100,000 (2011) children (data not shown). There was a sharp divergence between specialty and non-specialty care bed days: PCSCC bed days increased from 22,949 (1983) to 65,189 (2011) while they decreased in nonspecialty care centers from 12,804 to 6,089 over the same period. The median LOS increased from 2 to 4 days (nonspecialty care, private payer), from 3 to 4 days (nonspecialty care, public payer), 4 to 5 days (specialty care, private payer), and was unchanged at 5 days for specialty care, public payer patients. Accompanying the evolution of regionalized care was the change in payer status. Initially in 1983 there was an equal split between public (50%) and private (50%) payers in both specialty and nonspecialty sites. That is in contrast to 2011 when 66% of all bed days for pediatric CHD cases were covered by public programs; of those 96% were cared for in specialty hospitals and 4% in nonspecialty hospitals. There was a slight shift in primary cardiac discharge diagnosis over time: in 1983 the most common cardiac diagnosis was tetralogy of Fallot and in 2011 it was coarctation of the aorta (Table 2).
The increase in the use of regionalized services was concurrent with decreasing pediatric CHD mortality rates. The overall admission fatality rate was 5%, decreasing from 6% in 1983 to 4% in 2011 (p < 0.0001) (Table 1). To further examine inpatient pediatric CHD deaths, we adjusted for growth in the child population by calculating a pediatric CHD death rate per 100,000 California children. The death rate from pediatric CHD decreased from 5.1 to 2.3 per 100,000 between 1983 and 2011, a decrease of 45% (data not shown).
The overall death rate decreased during the study period, and the age at death, cause of death, and type of admission that resulted in death changed. The distribution of age at death shifted from occurring predominantly for children <1 year old (61%) in 1983, to being evenly split between newborn admission (41%) and in subsequent admission for children <1 year old (40%) in 2011 (Central Illustration). In 1983 and 2011 the most common fatal cardiac diagnosis for the newborn admission was hypoplastic left heart syndrome. Tetralogy of Fallot was the leading cause of death beyond the newborn period and children <1 year old in 1983, but fell to the fifth leading cause of death in 2011. The majority of deaths for the same age in 2011 were due to “chronic pulmonary heart disease (416.9).” Overall, the breakdown of type of admission that resulted in death changed: in 1983, 70% of deaths occurred during surgical admissions versus 30% for nonsurgical admissions. In 2011, 57% of deaths were surgical, whereas 43% were non-surgical. Finally, we examined those who died in the nonspecialty care setting in 2011. Ninety-five percent of all deaths occurred during either the newborn admission (58%) or between the newborn admission and age <1 year (37%). Age of death was younger than 3 months for all but 1 patient who was 6 months old. The most common diagnoses in this group were tetralogy of Fallot, double outlet right ventricle, and coarctation of the aorta. Only 1 of these admissions was for a cardiac surgical admission (data not shown).
Regionalized care for pediatric patients with CHD has increased during the last 28 years in California with varying trends for surgical and nonsurgical discharges. Surgical discharges saw the highest concentration of regionalized care (Central Illustration). During the last 10 years a plateau trend has emerged, with regionalized care leveling off for both surgical and nonsurgical types of discharges at around 85% beginning in 2002. This is in contrast to regionalized patterns of care for pediatric oncology discharges where levels reached 97% by 2008 (22). As outcomes for pediatric patients with CHD are improved in high volume centers, further work needs to explore policy opportunities to recapture the upward trend of regionalized care.
The amplified demand on the system was shown in the increased number of bed days, even when adjusted for child population growth. The additional use resulted in part from increased survivorship: the pediatric CHD death rate over time decreased by >50% in the last 28 years, from 51 to 23 CHD deaths/100,000 child population. This echoes the published data describing age of death shifting from <1 year old to closely mirroring the distribution of death in the general population (30). The increased survivorship resulted from a wide range of forces including technical and surgical advances, the development of cardiac intensive care units, improvements in interventional catheterization and cardiovascular imaging, as well as recognizing the optimal timing for repair (31–33); this is exemplified by tetralogy of Fallot falling from the leading cardiac cause of CHD death for infants in 1983 to the fifth leading cause in 2011.
The advances and emerging epidemiology of CHD have engendered new demands on systems of care, requiring increased specialization across a wide range of multidisciplinary teams found in regionalized centers where volume leads to improved quality (6,7). With these shifts have emerged other patterns: in California, deaths are increasingly associated with medical versus surgical admissions, echoing the published data describing that survivors succumb more often to medical conditions than surgical problems (34), and elevating the concern that regionalized care lags for nonsurgical admissions compared to surgical admissions.
PCSCCs have grown in both volume and in financial instability during the last nearly 30 years in California (35,36). As the number of children on Medicaid has increased, PCSCCs experienced an increased number of bed days covered by public payers. Increasing survivorship, coupled with an increasing number of U.S. children living in poverty (37) and the expansion of public coverage program such as the Children’s Health Insurance Program (CHIP), has resulted in a marked dependence on public reimbursement rates for PCSCCs. The result of this convergence is that PCSCC funding is increasingly vulnerable to policy shifts, and great care must be taken when reform of Title V programs is considered. Central to all conversations needs to be the understanding that relatively rare pediatric conditions are occurring in increasingly poor families, while PCSCCs continue to enhance their clinical capabilities to intervene. Shifts limiting access to such care will result in increasing health disparities.
It will be important to continue to monitor the degree to which pediatric patients with CHD can continue to access PCSCCs as the Affordable Care Act moves into implementation across the states. The time trends we describe can be used to monitor shifts in regionalized care as the dynamics of health care reform play out across California, and indeed the nation, during subsequent years. As the health insurance marketplaces or health exchanges emerge, the adequacy of networks are of concern (38) and must be closely monitored for inclusion of pediatric specialty care centers so that parents who seek coverage through exchanges have access to the necessary level of pediatric care.
Our findings should be interpreted with inherent limitations kept in mind. As with any administrative dataset, coding errors threaten validity. OSHPD is well established, and the accuracy of coding has been shown to be high in adults (39,40) but it has not been validated in children. We are unable to gain important clinical insight from this administrative data. A subset of “medical” admissions may have occurred while awaiting a surgical intervention, such as transplantation. If surgery did not occur, the case was considered medical as the only interventions were medical in nature, such as supportive care. For many pressing questions, such as why children die in nonspecialty care settings, other methodologies should be used such as chart review or focus groups with providers. In addition, we were unable to account for children who die at non-regional centers before being diagnosed with CHD. We were unable to account for the increasing number of patients being considered as surgical candidates over time. The study examines discharges in California, a diverse state with unique patterns of hospitalization. Our findings may not be applicable to other states or regions, particularly as regional systems of care tend to operate distinctively. However, as 1 in 7 U.S. children live in California, our findings retain relevance.
After examining population-based data longitudinally during nearly 30 years in California, distinct patterns of regionalized care for pediatric patients with CHD have emerged. Overall, there have been significant gains in concentrating care in PCSCCs, particularly for pediatric surgical cases. With increasing survivorship and an aging CHD population, many challenges remain. The fragility of inpatient care dominated by public payer status requires an increasing focus on the unique epidemiology of pediatric CHD and its attendant systems of regionalized care.
COMPETENCY IN SYSTEMS-BASED PRACTICE: Children with CHD hospitalized in California experienced variable access to pediatric cardiology subspecialty care during the period 1983 to 2011. Inpatient specialty care days increased, particularly for surgical procedures and the death rate among this population declined. A large proportion of care is funded by public payers.
TRANSLATIONAL OUTLOOK: As survival has improved and the CHD population expands and ages, health care planning should consider the implications of a fragile inpatient care system dominated by public payer status.
Drs. Fernandes and Grady have received funding from the Division of Pediatric Cardiology at Stanford University. Drs. Chamberlain, Sanders, and Wise, and Ms. Saynina and Ms. Staves have received funding from the California HealthCare Foundation. The funders did not have any role in the design or conduct of the study, in the collection, analysis, or interpretation of data, nor in the preparation, review, or approval of the manuscript. Dr. Wise is the scientific advisor to Medicus Tek.
- Abbreviations and Acronyms
- California Children’s Services
- congenital heart disease
- length of stay
- Office of Statewide Health Planning and Development
- pediatric cardiology specialty care centers
- Received April 9, 2015.
- Accepted April 21, 2015.
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