PGI24 Complications and Healthcare Utilization in Adult Patients Receiving Parenteral Support for Intestinal Failure Associated with Short Bowel Syndrome

Abstract

A multinational survey was conducted to assess treatment-related complications and healthcare utilization of patients with short bowel syndrome and intestinal failure (SBS-IF) receiving parenteral support (PS). This online, cross-sectional survey was conducted in adults from France, Germany, Italy, the UK, and the USA with a self-reported physician’s diagnosis of SBS-IF and receiving PS. Patients were recruited using patient advocacy organizations (PAOs), healthcare providers (HCPs), market research databases, online patient panels and social media. Participants were asked to report complications associated with PS treatment for SBS-IF and associated healthcare utilization in the past year. Data were summarized with descriptive statistics (mean ± SD, median [IQR], or percentage). Patients (N=181, aged 52.0±15.1 years, 56.9% women, and 47.0% with stoma) were recruited primarily from PAOs and HCPs (57% and 29%, respectively). Nearly one-third of patients (30.4%) reported no side effects or complications; 21.0% of patients reported liver damage or liver-related complications; line infections (17.1%) and catheter-related sepsis (15.5%) were also reported. Patients primarily saw gastroenterologists (84.5%) and dieticians or nutritionists (50.3%) for the management of SBS. In the past year patients had a mean of 1.5 (±3.1) hospital admissions (median, 1.0 [IQR, 0.0–2.0]) and 1.1 (±3.0) visits to emergency departments (median, 0.0 [IQR, 0.0–1.0]). Patients reported a mean of 9.2 (±12.4) procedures (median, 5.0 [IQR, 2.0–10.0]) and 0.7 (±1.8) surgeries (median 0.0 [IQR, 0.0–1.0]). Whilst 44.8% of patients reported no difficulties accessing care for SBS, 26.5% reported that it was hard to find an SBS specialist near them. Common complications of PS experienced by patients with SBS-IF were liver- and catheter-related. In the previous year, patients reported multiple procedures, at least one hospital admission and one emergency department visit. A quarter of patients reported that it was hard to find HCPs specializing in SBS locally.