Pediatric short-bowel syndrome: the cost of comprehensive care.

BACKGROUND: Little information is available about the financial charges incurred by patients with short-bowel syndrome (SBS). This is particularly true for pediatric SBS patients who receive some of the most complex medical care.

OBJECTIVES: The aims of this study were to determine the total cost of care for these patients and to analyze their utilization of home and hospital-based health care services.

DESIGN: This was a retrospective review of the total charges incurred by 41 children with SBS over the past decade, encompassing both inpatient and home-care charges.

RESULTS: The mean (+/- SD) total cost of care for pediatric SBS was US$505 250 +/- US$248 398 (corrected for inflation to the year 2005) for the first year of care alone. Inpatient hospitalization accounted for most of these expenses (US$416 818 +/- US$242 689, or 82% of the total), and this was attributable to prolonged requirements for intensive care resources, numerous surgical procedures, and multiple readmissions during the first year of diagnosis. Hospital-based costs steadily declined in subsequent years, but home-care services, in stark contrast, unexpectedly increased every year for the first 5 y of diagnosis-a trend that was highly significant (P < 0.005), reaching US$184 520 +/- US$111 075 for the fifth year of home care. This increasing cost was attributable to increasing complications of parenteral nutrition, especially infectious complications. Although per-patient charges varied widely, the mean total cost of care per child over a 5-y period was US$1 619 851 +/- US$1 028 985. A strong correlation was found between higher charges and infants with <10% of predicted small-bowel length.

CONCLUSIONS: This study was the first to calculate the total costs for pediatric SBS patients and to provide an in-depth analysis of these patients' actual utilization of health care services. This information may help guide health care providers and families who have children with SBS. The comprehensive care of pediatric SBS patients costs significantly more than has previously been estimated. Contrary to previous views, home care significantly increases each year after diagnosis.