Epidemiology, survival, costs, and quality of life in adults with short bowel syndrome

Abstract

Short bowel syndrome (SBS) is a rare disorder with known physical, psychosocial, and economic burdens and significant morbidity and mortality. Many individuals with SBS require long-term home parenteral nutrition (HPN). The incidence and prevalence of SBS is difficult to determine because it is often based on HPN usage and may not account for those who receive intravenous fluids or achieve enteral autonomy. The most common etiologies associated with SBS are Crohn's disease and mesenteric ischemia. Intestinal anatomy and remnant bowel length are prognostic for HPN dependency, and enteral autonomy confers a survival advantage. Health economic data confirm that PN-related costs are higher for hospitalizations than at home; yet significant healthcare resource utilization is necessary for successful HPN, and patients and families report substantial financial distress that impacts quality of life (QOL). An important advancement in QOL measurement is the validation of HPN-and SBS-specific QOL questionnaires. In addition to the known factors negatively impacting QOL, such as diarrhea, pain, nocturia, fatigue, depression, and narcotic dependency, research has shown that the volume and number of PN infusions per week is associated with QOL.Although traditional QOL measurements describe how underlying disease and therapy influence life, they do not assess how symptoms and functional limitations affect the QOL of patients and caregivers. Patient-centered measures and conversation focused on psychosocial issues helps patients with SBS and HPN dependency better cope with their disease and treatment. This article presents a brief overview of SBS, including epidemiology, survival, costs, and QOL.

A Systematic Review of Quality of Life in Patients with Short Bowel Syndrome and Their Caregivers

“…Variables such as age, sex, residual length of small bowel, presence of a stoma, comorbidities, and the daily usage of analgesics or opiates might not be adequately differentiated between groups on some scales. 26 , 39 Consequently, this variability can lead to divergent study conclusions, even if some results exhibit statistical significance. 40 Therefore, it’s essential for researchers to interpret findings within the context of the chosen measurement tools and the inherent limitations of these tools.…”

The Global Burden of Vascular Intestinal Disorders in 204 Countries and Territories From 1990 to 2019: Global Burden of Diseases Study

“…One particularly noteworthy consequence of VID is short bowel syndrome resulting from bowel resection, which necessitates long-term home parenteral nutrition. This places considerable medical resource costs and financial distress on patients and their families, further compromising their quality of life [ 42 ]. Our study also revealed a total of 1,872,339 DALYs attributed to VID in 2019, despite a decreasing trend in the ASR of DALYs from 1990 to 2019.…”

Bélelégtelenség: diagnózis és terápia

“…A kórkép gyakoriságát a benignus eredetű krónikus bélelégtelenség (CIF) miatt otthoni parenterális táplálást (OPT) kapó betegek száma alapján becsülik, Európában kb. 5-80 eset/millió lakos (3). Hazánkban az OPT-t kapó betegek száma ettől lényegesen elmarad: 10,2/millió lakos (a Magyar Mesterséges Táplálási Társaság adata).…”