Unseen burden: Emotional, financial and occupational impacts on caregivers of patients with short bowel syndrome

Document Type

Conference Proceeding

Publication Date

10-1-2025

Publication Title

Clin Nutr ESPEN

Abstract

Rationale: Short bowel syndrome (SBS) is a complex condition often requiring parenteral support (PS), leading to significant caregiver burden. This study assessed the multidimensional impacts of caregiving. Methods: A noninterventional, cross-sectional, online survey was conducted in the US and Europe among caregivers (≥18 years) of patients with SBS. The SF-12 Health Survey version 2 (SF-12v2) assessed health-related quality of life, and the Kingston Caregiver Stress Scale (KCSS) measured caregiver burden. SF-12v2 norm-based scores were compared with a US population-based mean score of 50.0. Results: 66 caregivers participated (US, n=45; Europe, n=21); most were White (62.3%), female (57.6%), and ≥45 years-old (56.1%). They were commonly a spouse partner (39.4%), child (33.3%), or parent (15.1%); 51.5% provided care ≥25 hours week, including errands (86.4%), appointments (84.8%), home healthcare (81.8%), and PS (78.8%). Caregivers reported moderate stress (mean KCSS, 20.2). Over 25% experienced moderate to extreme financial stress, with most (70.6%) caregiving ≥25 hours week. 40 caregivers were unemployed. In the past 7 days, 53.8% of employed caregivers reported caregiver-related absenteeism and 92.0% reported impaired work productivity; impairment was highest for those who spent ≥25 hours caregiving. SF-12v2 physical (54.0) and social (49.2) domain scores were comparable to the general population; role–emotional (47.2) domain scores were lower. Conclusion: Caregivers of patients with SBS dependent on PS experience a substantial emotional, financial, and professional burden. Caregivers in this study, especially those who provided care ≥25 hours week, reported substantial unemployment and financial stress. Most employed caregivers reported impaired work productivity and absenteeism. These findings emphasize the urgent need for support to alleviate caregiver burden and improve their well-being. Disclosure of Interest: M. Winkler Consultant for: Ironwood and Takeda Pharmaceutical, J. Harrison Other: Volunteer for Girls With Guts, R. Vemulapalli Other: CME Faculty for Novus Medical Education, V. Kumpf Consultant for: Ironwood, Baxter Healthcare, and Fresenius Kabi, G. Mitchell Other: Employee of Ironwood and may hold shares and or stock options in the company., D. Wolin Other: Full-time employee of RTI Health Solutions, an independent nonprofit research organization, which was retained by Ironwood to conduct the research that is the subject of this abstract. Their compensation is unconnected to the studies on which they work., L. Zografos Other: Full-time employee of RTI Health Solutions, an independent nonprofit research organization, which was retained by Ironwood to conduct the research that is the subject of this abstract. Their compensation is unconnected to the studies on which they work., M. Yang Other: Employee of Ironwood and may hold shares and or stock options in the company., L. Jackson Other: Full-time employee of RTI Health Solutions, an independent nonprofit research organization, which was retained by Ironwood to conduct the research that is the subject of this abstract. Their compensation is unconnected to the studies on which they work., J. Wang Other: Full-time employee of RTI Health Solutions, an independent nonprofit research organization, which was retained by Ironwood to conduct the research that is the subject of this abstract. Their compensation is unconnected to the studies on which they work., J. Henderson Other: Employee of Ironwood and may hold shares and or stock options in the company., M. Boules Other: Employee of Ironwood and may hold shares and or stock options in the company., S.-M. Jafri Consultant for: Intercept, Ironwood, AbbVie, Gilead, Takeda, and Ipsen

Volume

69

First Page

991

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