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Pediatric short-bowel syndrome: the cost of comprehensive care
Ariel U Spencer1, Debra Kovacevich, Michelle McKinney-Barnett
1Department of Surgery, University of Michigan, Ann Arbor, MI, USA.
Insights
The total cost of pediatric short-bowel syndrome (SBS) care is substantial, with home care costs rising significantly each year after diagnosis. This highlights the need for better financial planning for families and providers managing complex pediatric SBS cases.
Area of Science:
- Pediatric Gastroenterology
- Health Economics
- Clinical Nutrition
Background:
- Limited data exists on the financial burden of short-bowel syndrome (SBS), especially for pediatric patients requiring intensive medical care.
- Pediatric SBS patients often undergo complex treatment regimens, necessitating a thorough understanding of associated healthcare costs.
Purpose of the Study:
- To determine the total cost of care for pediatric patients with SBS.
- To analyze the utilization patterns of home and hospital-based healthcare services for these patients.
Main Methods:
- A retrospective review was conducted on the total charges for 41 pediatric SBS patients over a decade.
- Inpatient and home-care charges were analyzed to assess overall healthcare expenditures.
Main Results:
- The mean first-year cost of care for pediatric SBS was over $505,000, with inpatient hospitalization (82%) being the primary driver due to intensive care, surgeries, and readmissions.
- While hospital costs decreased over time, home care costs significantly increased annually for the first five years, reaching over $184,000 by year five, largely due to parenteral nutrition complications.
- The mean total cost over five years exceeded $1.6 million, with shorter small-bowel length correlating with higher charges.
Conclusions:
- This study provides the first comprehensive cost analysis for pediatric SBS patients, revealing significantly higher expenses than previously estimated.
- Healthcare utilization patterns show a notable increase in home care costs annually, contrary to prior assumptions.
- Findings offer crucial financial guidance for healthcare providers and families managing pediatric SBS.
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.
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