P487 - BEYOND THE DIAGNOSIS: THE SOCIOECONOMIC BURDEN OF SBS PATIENTS DEPENDENT ON PARENTERAL SUPPORT

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P487

BEYOND THE DIAGNOSIS: THE SOCIOECONOMIC BURDEN OF SBS PATIENTS DEPENDENT ON PARENTERAL SUPPORT

J. E. Harrison1, S.-M. Jafri2, R. Vemulapalli3, G. Mitchell4, D. Wolin5, L. Zografos5, M. Yang4, L. Jackson5, J. Wang5, J. Henderson4, M. Boules4,*, V. Kumpf6

1Girls With Guts, Philadelphia, 2Henry Ford Hospital, Detroit, 3UT Southwestern Medical Center, Dallas, 4Ironwood Pharmaceuticals, Inc., Boston, 5RTI Health Solutions, Durham, 6Vanderbilt University Medical Center, Nashville, United States

 

Rationale: Short bowel syndrome (SBS) is a debilitating condition, often requiring long-term parenteral support (PS), that can significantly impact patients’ health, employment, and daily functioning. This study assessed the socioeconomic burden of SBS.

Methods: A noninterventional, cross-sectional, online survey capturing employment status, caregiver dependence, healthcare utilization (hospitalization/emergency department [ED] visits), and quality of life (QoL) was conducted in the US and Europe among patients (≥18 years) diagnosed with SBS on parenteral support. QoL was assessed with the Short Form 36 Health Survey, Acute Version 2 (SF-36v2), which measured SBS/treatment impact on patient functioning; norm-based scores were compared with the US general population mean of 50.0.

Results: 91 patients completed the survey (mean age: 50.4 years; 58.2% female, 69.1% White). Patients were receiving total parenteral nutrition (TPN; 90.1%) and/or IV hydration (73.6%) and glucagon-like peptide-2 analog therapy (24.2%).

SBS impacted employment: 22.0% of patients were employed and 25.3% were permanently disabled. Among all patients, 57.3% missed ≥1 day of work/school/daily tasks in the past week and 25.8% missed ≥4 days.

High healthcare utilization: 27.5% were hospitalized for SBS-related complications in the past 6 months and 41.8% had ED visits. 76.9% relied on informal caregiving, averaging 17.9 hours/week.

Poor QoL: patients with SBS had notably lower functioning across all daily/work activity-related domains (SF-36v2 score range, 36.8-42.2) compared with the general population mean of 50. SF-36v2 Physical and Social Functioning scores were 41.9 and 38.6, respectively.

Conclusion: SBS imposes a severe socioeconomic burden (disability, missed work, caregiver need, hospital/ED visits, and diminished QoL), underscoring a critical need for improved treatments and support systems to reduce this burden and enhance patient outcomes.

Disclosure of Interest: J. Harrison Other: Volunteer for Girls With Guts, S.-M. Jafri Consultant for: Intercept, Ironwood, AbbVie, Gilead, Takeda, and Ipsen, R. Vemulapalli Other: CME Faculty for Novus Medical Education, 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., V. Kumpf Consultant for: Ironwood, Baxter Healthcare, and Fresenius Kabi