Adult survivors of pediatric illness: the impact on pediatric hospitals

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 [greater than or equal to] 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 [greater than or equal to] 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 [greater than or equal to] 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. Pediatrics 2002;110:583-589; 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. Because of therapeutic advances, patients now live well into adulthood surviving diseases [...]