Introduction: Short-bowel syndrome (SBS) is considered an orphan disease and no data on the cost of illness (COI) for SBS are available for Germany. This study evaluated the complexity of medical care and economic burden on a center with a specialized intestinal rehabilitation program using real life data.

Methods: 11 consecutive SBS patients of the intestinal rehabilitation program at the University Hospital of Bonn, Germany were included. A total of 979 parameters of treatment-related resources were considered for the year of diagnosis (year0) and a follow-up (FU) of 3 years. This included cost for in- and outpatient care, medication and parenteral nutrition. Subsequently, COI based on these parameters was calculated according to the corresponding service catalogs for Germany.

Results: Median inpatient days were 96 [IQR 59;119] in year0 and decreased to 3 [IQR 0;14] in year3 of FU. In contrast, outpatient visits increased from 1 [IQR 0;11] in year1 of FU to 2 [IQR 0;3] in year3 of FU, with a median of 8 visits [IQR 4;10] per patient in 2017. Median total COI for inpatient treatment amounted to 110889€ in year0. This sum consecutively decreased from 33225€ to 10217€ and 4205€ in year1/2/3 of FU, respectively. While major visceral surgery, open abdomen treatment and reconstructive procedures significantly impacted on COI in year0, catheter-associated complications and related vascular surgery mainly contributed to COI during further follow-up. Contrary to the calculated COI, actual reimbursements for inpatient treatment according to the German Diagnosis Related Groups amounted only to approx. 25%, with a median of 27041€ [IQR 16092;78520]. For outpatient care, calculated median total COI was 3265€ per patient, while reimbursement only amounted to approx. 16.5% (540€) in 2017. Median COI for prescribed medication and parenteral nutrition in 2017 was 6752€ [IQR 4990;15331] and 48485€ [IQR 29740;54442), respectively. Only one patient received GLP-2 analogon treatment, which added 138442€ p.a. to the medication cost for this patient.

Conclusions: The complex medical care required for SBS patients resulted in high COI both for in-and outpatient settings. The identified spectrum of surgical/medical interventions reflected a shift in medical treatment over time. Large discrepancies between COI based on "real life" resource expenditure and actual remuneration were found. This imbalance may endanger adequate care for SBS patients in Germany in the future.