Nutrition in clinical practice : official publication of the American Society for Parenteral and Enteral Nutrition · 2025
Quality of life and healthcare resource utilization among adult patients with short bowel syndrome: A mixed-methods study leveraging an integrated database.
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Kuk Deborah, Chen Brian Po-Han, Gower Megan, Kirby Michelle, Terreri Brian, Feldman Josh, McCue Maggie, Mundi Manpreet S
Аннотация
BACKGROUND: Short bowel syndrome (SBS) is a chronic condition requiring parenteral nutrition (PN) support and multidisciplinary management. However, disparities in access to care and standardized treatment pathways, in addition to economic burden, remain considerable for patients. Understanding healthcare resource utilization (HCRU) and treatment patterns, especially in relation to patient-reported outcomes (PROs), is critical for improving care.
METHODS: A cross-sectional, multiphase study was conducted in 2023. This analysis focuses on phase 3, using a deidentified database that integrated claims and PROs from 68 patients in phase 2. Twenty-three patients were included in the analytic cohort after applying additional criteria. Descriptive statistics summarized patient demographics, HCRU, and treatment patterns for the overall cohort and stratified by median SBS-quality of life (QoL) score.
RESULTS: The median age at SBS diagnosis was 35 years, and 91% of patients were female. Patients saw a median of 35 different healthcare providers and underwent approximately five procedures before diagnosis. In the 6 months after diagnosis, 39% had been hospitalized, and 26% had emergency room (ER) visits. Healthcare costs increased after diagnosis, with long-term PN use accounting for 34% of total costs. Patients with worse QoL had a higher number of ER visits than patients with better QoL. Patients who self-reported being treated by SBS specialists had lower healthcare costs than patients who did not receive specialized care.
CONCLUSION: SBS is associated with high HCRU and costs, particularly for patients with poor QoL. Multidisciplinary care, especially from SBS specialists, may help reduce healthcare costs and improve patient outcomes.
METHODS: A cross-sectional, multiphase study was conducted in 2023. This analysis focuses on phase 3, using a deidentified database that integrated claims and PROs from 68 patients in phase 2. Twenty-three patients were included in the analytic cohort after applying additional criteria. Descriptive statistics summarized patient demographics, HCRU, and treatment patterns for the overall cohort and stratified by median SBS-quality of life (QoL) score.
RESULTS: The median age at SBS diagnosis was 35 years, and 91% of patients were female. Patients saw a median of 35 different healthcare providers and underwent approximately five procedures before diagnosis. In the 6 months after diagnosis, 39% had been hospitalized, and 26% had emergency room (ER) visits. Healthcare costs increased after diagnosis, with long-term PN use accounting for 34% of total costs. Patients with worse QoL had a higher number of ER visits than patients with better QoL. Patients who self-reported being treated by SBS specialists had lower healthcare costs than patients who did not receive specialized care.
CONCLUSION: SBS is associated with high HCRU and costs, particularly for patients with poor QoL. Multidisciplinary care, especially from SBS specialists, may help reduce healthcare costs and improve patient outcomes.