S3056 Impaired Health-Related Quality of Life in Patients With Short Bowel Syndrome Dependent on Parenteral Support: Results From a Multinational Survey

Introduction: Short bowel syndrome (SBS) is a debilitating condition associated with substantial changes in health-related quality of life (HRQoL). Many patients with SBS require chronic parenteral support (PS), including total parenteral nutrition and/or intravenous hydration to maintain health and survival. This study evaluated HRQoL in adults with SBS dependent on PS using the acute version of the SF-36 Health Survey (SF-36v2). Methods: As part of a noninterventional, cross-sectional, online survey, SF-36v2 scores were collected from adults with SBS dependent on PS in the United States (US) and Europe. Survey participants’ norm-based SF-36v2 scores were compared with mean scores of the general US population (mean, 50.0; standard deviation [SD], ±10.0) and populations with Crohn’s disease and ulcerative colitis (UC). Results: Ninety-one patients participated (50 from the US; 41 from Europe); 69.1% were White, 58.2% were female, and the mean age was 50.4 (range: 24-73) years. Mean Physical (39.2 ± 8.3) and Mental (40.7 ± 12.2) Component Summary scores were approximately 1 SD below the general US population-based mean. All SF-36v2 domains reflected substantial impairments, particularly the General Health (33.9 ± 8.9) and Role Physical (36.8 ± 9.3) domains. Compared with populations with Crohn’s disease and UC, around 50% of patients with SBS scored “below” or “well below” the norms for the domains of General Health, Role Physical, and Vitality. SF-36v2 item-level data revealed that more than 90% of patients reported accomplishing less or spending less time on work/daily activities due to their physical health. More than 90% reported limitations with vigorous activities, and 78.9% reported limitations with moderate activities. Most patients reported feeling worn out (96.7%), with 46.6% feeling this way “most” or “all” of the time, and 36.3% reported that their physical or emotional health interfered with social activities “most” or “all” of the time. Conclusion: Adults with SBS dependent on PS experience broad functional impairment in HRQoL. Mean scores were lower than general population means across all SF-36v2 domains and were lower than those of patients with Crohn’s disease and UC for the General Health, Role Physical, and Vitality domains. These findings underscore the extensive impact of SBS and PS on physical, emotional, and social well-being, reinforcing the urgent need for therapies that address the multidimensional burden of this condition.