ArticleNutrition in clinical practice : official publication of the American Society for Parenteral and Enteral Nutrition2025
Short bowel syndrome-associated intestinal failure patient experience: A mixed-method study leveraging an online patient community.
Article in Nutrition in clinical practice : official publication of the American Society for Parenteral and Enteral Nutrition, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.
What it found
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
3 citing papers in PubMed.
- Quality of life and healthcare resource utilization among adult patients with short bowel syndrome: A mixed-methods study leveraging an integrated database.Nutrition in clinical practice : official publication of the American Society for Parenteral and Enteral Nutrition · 2026Article
- Short bowel syndrome-associated intestinal failure patient experience: A mixed-method study leveraging an online patient community.Nutrition in clinical practice : official publication of the American Society for Parenteral and Enteral Nutrition · 2025Article
- Filling the gaps: Information sources and needs of patients with intestinal failure and their caregivers.Intestinal Failure (New York, N.Y.)Article
Corrections and comments
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Authors and funding
7 authors.
Funding
Abstract
backgroundPatients with short bowel syndrome-associated intestinal failure (SBS-IF) require complex, personalized, and multidisciplinary care; however, there are disparities in access. This study measured the impact of unmet needs and treatment burden among patients and their caregivers.
methodsThis cross-sectional, mixed-method study included US adults self-reporting SBS-IF and receiving home parenteral nutrition for ≥6 months and their caregivers. One-hour interviews informed the development of a 30-min survey administered to participants from an online health community.
resultsAmong 68 patients, the mean age was 42 years, 79% were female, and 88% were White. Most of the 16 caregivers were female (69%), and younger than 45 years (69%). Of 32 patients (47%) receiving care from an SBS specialist, only 19 (59%) were referred after diagnosis; in 58% of these, referral occurred >6 months after diagnosis. Depression was reported in 44 patients (65%), with 54% not receiving professional mental health care. Financial concerns were common, with 44 patients (65%) unable to work and 40 patients (59%) reporting annual household income of <$50,000. Of 32 patients reporting difficulty paying medical bills, 22 (32%) could not fill prescriptions and 19 (28%) canceled/delayed healthcare provider visits. Social determinant of health challenges were reported by 44 patients (65%). Caregivers' responsibilities impacted their ability to work (50%) and future outlook (63%).
conclusionPatients with SBS-IF face difficulties accessing specialized healthcare, and are at risk of adverse healthcare outcomes, financial hardships, and poor quality of life. Mental health and work/financial issues were common among both patients and caregivers.
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