PEDIATRICS Vol. 110 No. 3 September 2002, pp. 583-589
Adult Survivors of Pediatric Illness: The Impact on Pediatric Hospitals
* Division of Pulmonary and Critical Care Medicine
Clinical Effectiveness and Quality Improvement
Quality Improvement
|| Medical Management; Children’s Memorial Hospital, Chicago, Illinois
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ABSTRACT |
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 TOP ABSTRACT INTRODUCTIONMETHODSRESULTSDISCUSSIONREFERENCES |
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Context. Patients now live well into adulthood surviving diseases with pediatric onset. The size and financial impact of this growing population is unknown.
Objective. To describe the demographics of adult inpatients in pediatric facilities and to assess the financial impact of providing care for these patients on freestanding children’s hospitals.
Design and Data Sources. An observational study using the Pediatric Health Information System, a proprietary database available to Child Health Corporation of America member hospitals, covering years 1994–1999. These data reflect inpatient services and exclude outpatient encounters and adult patients transitioned to adult providers. National estimates of the number of adult survivors of pediatric illness and the financial impact of care were calculated.
Hospitals with >100 discharge events for patients 
age 21 in 1999, and having both clinical and financial data in the dataset, assured an adequate sample size to discern resource utilization. Both 18 and 21 were used as lower limits of adult age to reflect common definitions of legal majority (age 18) and common pediatric practice (age 21). We truncated the data at age 64 to exclude patients eligible for Medicare.
Results. Ten hospitals representing all geographic regions of the United States were used for an in-depth analysis of financial impact during 1999. Six of 10 had data for 1994–1999 to describe trends over time. The number of patients admitted over the 6-year period increased, as did average and total adjusted charges. In 1999, 3863 patients 18 to 64 years old incurred 5051 discharge episodes and total charges of $134.5 million. Of these, about half (1785) were 21 with charges of $66 million. Of the hospitals’ total discharges and financial charges, on average 2.1% and 3.1%, respectively, were from the inpatient care of patients 21 to 64 years old. Forty percent of patients receive public aid. Extrapolating from census data, up to 15 000 patients 21 years annually may seek inpatient care in part at children’s hospitals, with charges exceeding $500 million. The 3 most common diagnostic groups to be admitted were those with cystic fibrosis, mental retardation or cerebral palsy, and congenital heart disease.
Conclusions. We describe a subset of adults who have survived diseases of pediatric onset. We focused on the portion of that population that obtains at least some inpatient care at a children’s hospital. The data reported here can be used to set a lower boundary for the size of this population, and thereby provide valuable data for health planners as well as clinicians. If one includes estimates of expenses across the continuum of care, the financial impact of this growing population is substantial. Public policy discussions should include the medical, psychological, social, and financial needs of this population.
Key Words: adult patients • pediatrics • pediatric hospitals • resource utilization • adult survivors • congenital disease • health resources • chronic illness
Abbreviations: PHIS, Pediatric Health Information System • HCFA, Health Care Financing Administration • ICD-9, International Classification of Diseases, Ninth Revision
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INTRODUCTION |
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TOPABSTRACTINTRODUCTIONMETHODSRESULTSDISCUSSIONREFERENCES |
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Because of therapeutic advances, patients now live well into adulthood surviving diseases with pediatric onset, such as congenital heart disease, cystic fibrosis, and sickle cell anemia. As adults these patients often seek care at children’s hospitals; they often maintain a preexistent association with pediatric providers, or they may renew care with pediatricians after an interval of care by an internist. Adults may also be cared for at children’s hospitals because of unique treatment opportunities developed in pediatric facilities.
Some information is available concerning transitioning patients from pediatric to adult care by specific diagnosis, such as congenital heart disease,1–3 cystic fibrosis,4,5 seizures,6 spina bifida,7 and thalassemia.8 However, we are unaware of published data describing the prevalence and impact of providing care to adults as inpatients in children’s hospitals. For this reason, we sought to describe the phenomenon of adult inpatients in pediatric facilities and to assess the financial impact of providing care for these patients on freestanding children’s hospitals.
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METHODS |
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TOPABSTRACTINTRODUCTIONMETHODSRESULTSDISCUSSIONREFERENCES |
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Database
We examined data in the Pediatric Health Information System (PHIS). PHIS is a proprietary database available to Child Health Corporation of America member hospitals and other approved institutions. Comprised of detailed clinical and financial data submitted by its members, freestanding children’s hospitals, PHIS is the largest and most comprehensive pediatric database available, and allows for comparison of clinical and financial performance.
We examined inpatient events identified as discharge episodes. We also used a unique blinded medical record identifier to tabulate individual patients. Analyses included a) demographic and financial trends over the 6-year period from 1994–1999; and b) detailed demographic and financial profiles for the 1999 calendar year. In compliance with confidentiality requirements, the study scope and design was reviewed by the PHIS Research Committee and the Children’s Memorial Hospital Institutional Review Board.
We used US census data to estimate nationally the numbers of adult survivors of pediatric illness9 and data from the Health Care Financing Administration (HCFA)10 to estimate impact across the continuum of care.
Hospitals
From the 26 hospitals in the database, 10 hospitals were identified that had >100 discharge events for patients 21 years in the 1999 calendar year, and which also had both clinical and financial data submitted for the 1999 calendar year. The hospitals we used represent all geographic areas of the United States, reflect varying degrees of managed care penetration, and are all freestanding, academic, tertiary care pediatric providers. The metropolitan areas surrounding these hospitals have 500 000 to 9.3 million people with a pediatric population 
25% of the total projected 1999 estimated population. Table 1 gives other hospital characteristics.
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We elected to use the threshold of 100 discharges to ensure that the presence of adults in the pediatric facility was frequent enough that patterns of resource utilization could be discerned. With fewer adult patients, the infrequency might lead to atypical utilization of services representing outliers rather than reflecting prevailing practice for those institutions that routinely admit adult patients. With 26 noncompeting hospitals in the database, roughly half see a significant number of adults yearly.
Six of these 10 hospitals had complete demographic and financial data for years 1994–1999 inclusive, and were used to describe demographic and financial trends over time for adults cared for by pediatric facilities. Data from all 10 hospitals for the 1999 calendar year were used for a more comprehensive, detailed description of demographics, financial burden, and diagnoses.
Definition of Adults
In most states, legal majority is attained at 18 years of age. Thus, we felt analysis using this age would reflect a nationally articulated definition of an adult. However, many pediatricians continue caring for patients through completion of college, generally age 21. Moreover, the Cystic Fibrosis Foundation endorses a goal for transition of 90% of patients to adult care by age 21 (personal communication, P. Campbell, Cystic Fibrosis Foundation, Bethesda, MD, March 28, 2001). For these reasons we examined data using both 18 and 21 as lower limits of adult age. We truncated the data at age 64. After age 64, patients are eligible for Medicare, an entitlement that may change source and nature of health care benefits. The oldest patients reported by the 10 hospitals were 39, 46, 53, 53, 56, 62, 71, 81, 90, and 93 years old. We estimated that with an upper limit of 64 years of age at most 3% of total discharge episodes were excluded.
Definition of Adjusted Charges
The PHIS dataset contains charges that are adjusted by HCFA wage/price index for a hospital’s location.
Definition of Underlying Chronic Disease
To analyze the population by specific diagnostic groups, we used a unique blinded medical record identifier to enumerate patients rather than discharge episodes. For each patient all coded International Classification of Diseases, Ninth Revision (ICD-9) discharge diagnoses11 (principal diagnosis and secondary diagnoses) were listed. We then assigned each patient to a single mutually exclusive diagnostic category by sequentially searching the list by each diagnosis grouping. For instance, we searched first for mental retardation and cerebral palsy. If a patient had any of these diagnoses, he/she was removed from the list of patients and assigned to that group. The remaining patients were then searched for the next diagnosis (in this case, cystic fibrosis). The diagnostic groupings progressed from the least inclusive to the most inclusive category. We then rearranged the order of diagnoses by which patients were sequentially removed to ensure that the frequency distribution of diagnoses remained stable. Regardless of the search order, the proportion of patients in each diagnostic category was stable. The final hierarchy of the diagnosis groupings with their associated ICD-9 codes is presented in Table 2.
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RESULTS |
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TOPABSTRACTINTRODUCTIONMETHODSRESULTSDISCUSSIONREFERENCES |
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Patient Profile Over Time
The longitudinal description of the impact of adults in pediatric facilities from 1994–1999 is presented in Figs. 1 through 4. Each figure represents adults grouped as 18 to 64 and 21 to 64. The number of discharge episodes was relatively constant over time (Fig. 1), but the number of individual patients increased during the same period (Fig. 2), signifying a decreased readmission rate. This reflects current secular trends toward more outpatient care, thus fewer inpatient episodes per patient. This also reflects the growing number of individuals represented over the term of the study. Total (Fig. 3) and average (Fig. 4) hospital charges increased over 6 years. Average adjusted charges for the subgroup 21 to 64 years old were 22% higher than were those for the larger group of patients 18 to 64 years old for these 6 hospitals averaged over the years 1994–1999. Average length of stay for the 6 hospitals over 6 years was 7.22 days for those 18 to 64, and 8.32 days for those 21 to 64.
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Detailed Analysis of Impact
For a more comprehensive examination of the demographic and financial consequences of adults in pediatric institutions, we analyzed all 10 hospitals for the 1999 calendar year. Table 3 shows that patients between 18 and 64 years old incurred 5051 discharge episodes representing 3863 patients. For those 21 to 64 years old, 2127 discharge episodes were represented by 1785 patients. Because this is a single-year cross-sectional sample, we cannot say with certainty that half of patients 18 or older have transitioned to an adult facility by age 21. We can conclude that, of patients 18 or older cared for in these freestanding children’s hospitals, half are older than 21.
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Using these data compared with the total number of discharges for the 10 hospitals, we conclude that patients 18 to 64 years old represent 4.9% (up to 7%) of hospital discharges, while those 21 to 64 years old represent 2.1% (up to 3.4%) of discharges. Examining charges, patients 18 to 64 years old represent 6.3% (up to 11.4%) of business for these hospitals, and those 21 to 64 years old represent 3.1% (up to 9.3%) of charges.
The 2 largest charge categories were "rooms and nursing" representing 28% to 30% of average charges, and pharmacy contributing another 29% of charges. Approximately 40% of patients receive public aid; thus, these 10 hospitals charge public agencies $54 million for care of those 18 or older, and $27 million for care of those 21 or older. These charges exclude physician fees and outpatient charges.
We used census data to determine the proportion of the population of the 10 metropolitan areas reflected by the 1785 individuals 21 to 64 years old admitted in 1999. We then extrapolated to the entire US population to approximate the number of adult survivors nationwide who may obtain inpatient care. This serves to estimate the number of adults who may visit pediatricians for at least part of their health care. We conclude that up to 15 000 adult patients in a given year may incur approximately $556 million, or half a billion dollars, in charges annually for hospital inpatient care provided by pediatricians. If one uses age 18 to define onset of adulthood, the annual adjusted hospital charges may exceed $1 billion.
Discharge Diagnoses
We sought to answer 2 questions, namely 1) why do these adult patients require hospitalization, and 2) why do these adult patients come to a children’s hospital? Table 4 gives the top 10 principal diagnoses by discharge episode, which represent the final discharge diagnosis by ICD-9.11 The principal diagnoses (indicating reason for admission) represent diseases typically first encountered during childhood, such as cystic fibrosis, neoplasm, sickle cell anemia, and hydrocephalus requiring ventriculoperitoneal shunt. However, several of these principal diagnoses represent entities well within the purview of internists, such as seizures, pneumonia, and status asthmaticus. Therefore, we sought to further clarify whether a comorbidity reflecting a disease of pediatric onset was present.
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To better define this we examined primary and secondary diagnoses to aggregate the patients by underlying disease as described in "Methods." Table 2 presents these findings. We were able to account for
70% of the population in the diagnostic groups. The 3 most common diagnostic groups for both the 18- to 64-year-old and 21- to 64-year-old age groups were cystic fibrosis, mental retardation and cerebral palsy, and congenital heart disease. |
DISCUSSION |
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TOPABSTRACTINTRODUCTIONMETHODSRESULTSDISCUSSIONREFERENCES |
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Numerous publications describe issues surrounding adult survivors of pediatric disease by specific diagnosis.1–8 In addition, the many issues surrounding successful transition of care to adult providers have been comprehensively reviewed.12–16 To our knowledge, this is the first empiric data across diagnoses detailing the prevalence and impact of adult survivors who obtain care from pediatric providers in this national sample. Before discussing the significance of our findings, we must acknowledge some limitations with our approach.
First, the primary dataset we used cannot detail the breadth of issues surrounding adult survivors of pediatric illness. The data includes inpatient episodes only, and thus other sectors of health care are excluded, such as physician fees, outpatient pharmacy charges, clinic visits, and home health care. Second, diagnostic coding is subject to individual judgment regarding its completeness and specificity; despite this, we were able to construct plausible diagnostic categories by which to describe our population.
Another criticism of the analysis is that we have not analyzed those adults who survived their childhood illness and now receive care by adult providers. Thus, we likely underestimate the number of adult survivors of childhood disease. This analysis would be of great interest in developing a more comprehensive understanding of adult survivors of diseases of pediatric onset. On the other hand, our principal focus is on those survivors who continue to seek care from pediatric centers. Those cared for by internists would add to the total national prevalence of adult survivors and to estimates of their impact on health finances. A related issue is that we are unable to compare charges and outcomes of pediatricians versus internists who provide care to this group of patients.
Our article reflects prevailing practice in North America in that we used the ages of 18 and 21 as typical ages at which patients may transition to adult caregivers. Other countries may transition patients at age 16 or even younger.17,18
A final limitation is found when attempting to compare adults and children with the same diagnosis. The most severely affected patients of childhood disease are likely to have early mortality, while young adult survivors may represent patients with milder illness or who have experienced a better response to applied therapies. As they age, however, these adults may experience progressive deterioration in function. Despite a common diagnosis, children and adults represent a noncomparable population.
Despite these potential shortcomings, we believe this analysis adds significantly to an understanding of adult survivors of childhood illness, particularly those who obtain care from pediatric institutions. This population is likely to grow as medical advances successfully prolong life despite potentially devastating disability. We have focused on the financial impact of these patients on children’s hospitals, but other issues are also relevant, including 1) ongoing medical needs that merge the expertise of pediatricians and internists; 2) financial impact of patients with lifelong health care needs; 3) societal responsibility, such as issues of insurability and employability; 4) psychological needs of patients who must move from childhood dependence to adult independence; and 5) the impact of adult survivors on the culture of children’s hospitals. Our results underscore the fact that this population is sizable; subsequent work is needed to address the other issues, including the imperative to appropriately transition patients to adult caregivers.
The body of knowledge needed to care for these patients includes elements of pediatrics and internal medicine. Thus, we advocate that any pediatric hospital routinely admitting adult patients have a formal system for internal medicine consultation and co-management as needed. In addition to physician expertise, that of nurses, therapists, and others must be redirected when adult patients are admitted to freestanding children’s hospitals. Patient autonomy and decision-making, involvement in self-care, and discharge needs are significantly different for adults, impacting the patient-specific interventions provided by health care workers. The fundamental differences between pediatric and adult health care systems are well-described elsewhere, as are the prerequisites for a successful transition program.12–16,19,20
Public policy decisions regarding the transition into adulthood of patients with chronic disease will also need to address the financial burden of long-term disease, both to the individual and to society. Children with chronic health conditions have a substantial proportion of severe acute illness,21 and this trend likely extends into adulthood. Thus, these patients may more quickly exhaust insurance resources, if, in fact, they are able to obtain insurance. Moreover, children with special health needs are disproportionately poor and socially disadvantaged,22 so that they may start adulthood with fewer financial, educational, and social resources than most Americans, yet live with greater needs.
Because our data reflects inpatient charges, we used HCFA data to estimate additional health expenditures (health services and supplies, professional services, physician services, other professional services, home health care, prescription drugs, and durable medical equipment). These amount to roughly 5 times that for hospital care (1999 data). Thus, the population described herein, adults seeking care from pediatric institutions, may have total health care costs of $2.5 billion-$5 billion annually. In view of the limitations already enumerated, these data set a lower boundary for the size and financial impact of this population. Assuming our population underestimates the number of all adult survivors, we can assume that the national health care burden is substantial.
Traditionally, states have recognized the excess costs incurred by families with children having special health care needs. Most of these programs extend only to age 21. The Cystic Fibrosis Foundation surveyed states regarding availability of state assistance programs for adults with cystic fibrosis23 and found that only 22 states have some such program. Resources for patients with other diagnoses may be equally limited.
The financial burden falls on institutions as well as individuals. Prospective payment systems may not adequately reflect the increased costs of patients with long-standing chronic conditions and active comorbidities.24 Infrastructure expenses are also different for pediatric institutions. For instance, teaching hospitals with adult patients receive federal funds through Medicare to offset the costs of maintaining a resident teaching program. No such ongoing appropriation exists for freestanding children’s hospitals, despite the fact that they train a significant number of the nation’s pediatricians. Public Law 106-310 (passed in 2000) included an allocation for graduate medical education programs in children’s hospitals,25 but this does not ensure ongoing support.
Children’s hospitals are designed around the unique psychological needs of dependent children, and may have fewer resources for independent adults. Conversely, the pediatric focused culture of children’s hospitals may itself be altered by the presence of adult patients. We are unaware of any empiric data regarding parental concerns or disruption of pediatric activities by the presence of older patients.
Our data does not reveal the reasons underlying prolonged care in pediatric institutions for these adult patients, but it does begin to frame the scope of the issue across diagnoses. The issues of professional expertise, financial burden, patient psychology, and environmental culture are critically important to providing the best of patient care. We believe that the medical community has underrecognized the unique needs of adult survivors of pediatric disease, and that this growing group of patients offers potential for new subspecialty focus and for ongoing research. Depending on the clinical situation, pediatricians and internists may both offer important insights into patient care. Clearly, our study demonstrates that these patients contribute substantially to the activity of children’s hospitals, and this fact alone justifies additional study as to the needs of these patients and the ability of the health care community and society as a whole to meet these needs. Our data underscore the importance of transition programs for adolescents and young adults, for greater training of internists in the issues surrounding adult survivors of pediatric disease, and for formal collaboration between pediatric and adult practitioners when caring for adult survivors of childhood disease.
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ACKNOWLEDGMENTS |
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We thank the Pediatric Health Information System of the Child Health Corporation of America.
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FOOTNOTES |
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Received for publication Sep 27, 2001; Accepted Apr 18, 2002.
Address correspondence to Denise M. Goodman, MD, MS, 2300 Children’s Plaza, Box 73, Children’s Memorial Hospital, Chicago, IL 60614. E-mail: dgoodman{at}northwestern.edu
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PEDIATRICS (ISSN 1098-4275). ©2002 by the American Academy of Pediatrics
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