758 Pediatric Short Bowel Syndrome: the Cost of Caring for These Complex Patients

Abstract

Background: The economic impact of care for short bowel syndrome (SBS) patients is unknown. Our institution provides not only inpatient care for a large pediatric SBS population, but also operates a comprehensive home-care program (including infusion, durable medical equipment and nursing), allowing us to assess total cost of care (COC) incurred with SBS. Methods: This study examined actual COC (defined from the payers' viewpoint, i.e., charges) of pediatric SBS. All charges were adjusted for inflation to mid-decade (2005) U.S. dollars. Costs were stratified as “Hospital care” (inpatient stays, procedures, and outpatient clinic charges) or “Home-based care” (parenteral nutrition, enteral supplements, home nursing charges, pump charges, pharmaceuticals, and rentals). Total COC for all patients for the first 5 years after onset of SBS were assessed for each year. To detect the significance of potential secular trends, linear regression was performed using the least squares method. P<0.05 was considered significant. Data includes all patients in a pre-transplant state. Results: A total of 41 patients were studied, all with SBS diagnosed in infancy. In-patient hospital days averaged 136±188 (mean ± SD; median: 82 days) and incurred a cost of $452,527±578,659 (median: $296,808) at an average of $3,315±$1,187 per day. Home-based care averaged $93,014±69,433 (median: $83,572) per patient during the first year of care alone. Interestingly, the cost of home care was found to increase every year for the first five years of diagnosis, a trend that was highly significant (P<0.005), reaching $190,056±111,075 (median: $209,069) for the fifth year of home care. This increasing cost was attributable to increasing complications of PN, especially infectious complications. Although charges per patient varied widely, the mean total cost of care per child was $808,970±497,753 over the first 5 years post-diagnosis. To better understand which patient's had the highest COC, financial data was then correlated with patient's clinical outcomes. Regression analysis results showed that the only factor which predicted increased COC was infants with bowel length <10%of predicted for their gestational age (C.I. $174,265 $703,209, P=0.003). Conclusions: This study is one of the first to estimate total COC for pediatric SBS patients. This information may help guide healthcare providers and patient's families of children with SBS. Importantly, the comprehensive care of pediatric SBS patients costs significantly more than has previously been assumed. Contrary to previous views, the SBS COC does not diminish with time; but significantly increases each year.