Abstract

PurposeTo undertake a pilot study estimating patient-level costs of care for paediatric short bowel syndrome (SBS) from the healthcare provider perspective.MethodsA pilot group of patients with anatomical SBS was selected at a single specialist tertiary centre in the United Kingdom. The Patient Level Information and Costing System (PLICS) was used to extract costing data for all hospital-based activities related to SBS, from the implementation of PLICS in 2016 to April 2021. Patient-specific and pooled data were reported descriptively in per patient-year terms.ResultsFive patients had full PLICS data available for the 5-year study period and 2 patients had 4 years of data. The median cost for hospital care of SBS was £52,834 per patient-year (range £1804–£331,489). The key cost drivers were inpatient beds, pharmacy, and staffing costs, which made up > 60% of annual costs. In the first 3 years following index admission (n = 2), there was a steady decline in the annual cost of care to a level comparable with patients with established SBS.ConclusionPatient-level cost of care analysis for SBS is feasible using PLICS. Hospital-related costs vary widely between and within individual patients over time. Key drivers of cost are related to complications of SBS.

Highlights

  • Short bowel syndrome (SBS) is a clinical syndrome with several congenital and acquired causes defined by the lack of adequate functional intestinal epithelium to maintainBrendan C

  • We aimed to demonstrate the feasibility of the Patient Level Information and Costing System (PLICS) system to produce data estimating patient-specific costs of existing care of paediatric short bowel syndrome (SBS) from the perspective of an National Health Service (NHS) trust

  • To avoid the marked variability related to the cost of care during the SBS-precipitating event [19], this study focuses on the estimate of costs of care on patients after discharge from the index admission

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Summary

Introduction

Short bowel syndrome (SBS) is a clinical syndrome with several congenital and acquired causes defined by the lack of adequate functional intestinal epithelium to maintainBrendan C. It is estimated to affect up to 1 in 25,000 patients in the developed world [1,2,3]. For those who survive the initial insult, SBS requires intensive inpatient, outpatient, and community-based care with input from multiple medical, surgical, nursing, and allied health specialities. Supportive treatments include parental nutrition (PN), intestinal lengthening procedures, and for those with severe disease and access to a specialist service, intestinal transplantation [4,5,6]. There are many complications of SBS, and currently available treatments are associated with significant side effects including, PN-associated liver failure, sepsis, replacement and loss of central venous access devices (CVAD), metabolic bone disease, transplantassociated immunosuppression, and death [5]. SBS 5-year survival may be as low as 20%, while those undergoing small bowel transplantation have a 5-year survival of only 58% [7,8,9]

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