Children's hospitals are caring for increasing numbers of patients outside of the traditional pediatric age range. Although these individuals make up only a small fraction of inpatients, thousands of adults receive care at these 30 children's hospitals annually. Adults are more frequently readmitted than patients in the pediatric age group, and their inpatient-days and charges are disproportionately higher. The increase of patients aged 18 to 21 years exceeds that for pediatric patients, and our projections suggest that both transitional and adult inpatient populations will continue to grow. Although children's hospitals may see a disproportionate number of these patients compared with general hospitals because of their clinical focus, our observations demonstrate that the growth of transitional-aged patients is out of proportion to general increases in pediatric patient numbers.
Determination of the best location for the care of adults with chronic conditions that originate in childhood is a topic that is addressed in a growing body of literature 4,16–18,23,29,37
but remains unclear. A key question is the role of children's hospitals and whether they provide care for children only or for all patients with childhood diseases. Balancing subspecialty care against age-appropriate care is difficult. Care for young adults with CF is an example of a situation in which adult and pediatric providers work together to successfully transfer care provided in children's hospitals to adult care settings.4,23,29
Young adults with CHD, on the other hand, have high health care utilization, which increases with age.38
However, CHD is much more heterogeneous, and encompasses >100 separate conditions that require specialized medical, surgical, and imaging equipment and personnel.12
Recent studies of the prevalence of CHD have shown that the numbers of children and adults with complex CHD is roughly equal.39,40
This emerging population will require lifelong proactive management to reduce secondary disability and might be expected to consume considerable health care resources. Cerebral palsy is among the most challenging of conditions, because it is even more heterogeneous, often with complex comorbidities and developmental disabilities not typically treated in adult-oriented environments.10,34
Children's hospitals rarely have the comprehensive resources and expertise necessary for care of conditions acquired in adulthood. Their physical facilities and supplies are not designed for adults, personnel tend to be less well-trained in adult care, and ancillary services that support adults, such as for job placement, are often lacking. Nonetheless, pediatric hospitals and providers may be uniquely able to provide specialized care for sequelae from conditions originating in childhood. For example, children's hospitals have providers and equipment needed to perform complex invasive procedures to treat CHD,16–18,22,37
and standardized, multiinstitutional protocols used by pediatric oncologists lead to better outcomes among young adults with leukemia compared with patients of the same age treated by providers trained to provide care to adult patients.25
When specific disease categories are compared, a complex landscape emerges. The CF community has an explicit program to facilitate the transition of patients to adult providers.23,29
The increase in patients among the transitional age group likely reflects improved survival, and the decrease of adult patients treated at pediatric hospitals may be attributable to successful transitions to adult providers. In contrast, growth rates are high for adult patients with malignancy, CHD, and cerebral palsy treated at pediatric hospitals, conditions that lack widespread transition programs. Although these patients may continue to require the specialized resources of pediatric centers, they may also be encountering barriers to transition to adult providers.
Barriers to transitioning patients to adult providers include concerns regarding patient maturity, psychosocial and family needs, and systemic issues of transfer coordination and reimbursement.1,5,6,11
The identification of adult providers able to care for these patients is a challenging task that requires unique attributes of training and access,41,42
especially for patients with unique needs, such as those with severe neurodevelopmental compromise. Coordination among multiple providers (eg, pediatric, adult, and primary and specialty care) and the preparation for transfer of care are all essential. The markedly increasing number of inpatient-days and charges for adults with cerebral palsy may serve as an example that illustrates these systemic issues.
Health care reform will undoubtedly have an impact on the transition experience and quality of life of adults who are survivors of pediatric chronic diseases. Currently, these patients are at risk of losing health insurance when their age makes them unqualified for assistance programs for children but they are ineligible for conventional insurance owing to preexisting conditions.43–45
In addition to bringing about the expansion of insurance coverage, reform efforts could improve care for this population by incorporating reimbursement of time-intensive tasks such as counseling and transition planning. Our data suggest that transition planning is an ongoing need, with a substantial percentage of our patients being older than 23 years and one-quarter of them being 32 years old or older.
This study has important limitations, many of which are related to its focus on inpatient care at 30 children's hospitals, which represents only a fraction of the health care that this population receives nationally. Although one could assert that the focus on this group of patients imposes a selection bias, this subset reveals important trends. The disparate observations according to diagnostic group suggest that underlying systemic issues explain our findings that some conditions predispose patients to continue to seek care from pediatricians, whereas others do not. The hospitals that participated in this study care for 7.6% of pediatric inpatients and 20% of inpatients at tertiary general children's hospitals in the United States. Because one-third of health care costs are for inpatient care,46
the $627 million annual inpatient charges for our sample of transitional age and adult patients may actually be indicative of billions of dollars across the health care continuum per year. In addition, we were unable to explore differences between pediatric and adult providers or to compare care rendered at general hospitals versus children's hospitals. Finally, for the situations in which adult use of children's hospitals is decreasing, we cannot determine if the change is attributable to successful transition to adult care, decreased survival, or geographic relocation. In addition, there are inherent limitations to use of administrative data for health services research, including those of diagnostic coding and data entry.
Adults with chronic conditions of childhood require the expertise of both pediatric- and adult-trained providers and are familiar with the pediatric and adult manifestations of the conditions. Patients with complex lesions who require a highly resourced system of care to support surgical and other procedural interventions may benefit from unique services available in a pediatric hospital. For these patients, comanagement by a provider trained in adult medicine may be optimal. Ultimately, each institution, on a condition-by-condition basis, must determine the best way to organize their local health care system and community to care for these patients.