Multifaceted burden of short bowel syndrome for patients and caregivers: The landmark survey

BACKGROUND: Short bowel syndrome is a debilitating condition often requiring long-term parenteral support to maintain hydration, nutrition, and survival. METHODS: As part of the noninterventional, cross-sectional Landmark Survey study, we evaluated burdens associated with short bowel syndrome and parenteral support dependency from patient and caregiver perspectives in the United States and Europe. The survey assessed disease-related comorbidities, symptoms/complications, healthcare resource utilization, employment impact, and quality of life among patients and quality of life, stress, and employment impact among caregivers. RESULTS: Patients (n = 91) frequently reported comorbidities (e.g., Crohn's disease, 25.3%), disabling symptoms/complications (e.g., fatigue, 73.6%), emergency department visits (41.8%), and overnight hospitalizations (27.5%). Most patients (63.7%) were dependent on both total parenteral nutrition and intravenous hydration: 43.9% and 35.8% reported daily use of each, respectively. Patients experienced substantial impairments in work- and activity-related productivity and, relative to populations with Crohn's disease and ulcerative colitis, had worse general health and physical health states. Caregivers (n = 66) also reported considerable burden: over half provided care for ≥25 h/week. Caregivers reported moderate levels of stress, including financial stress (45.5%), feeling overwhelmed (63.6%), and experiencing impacts to their social lives (65.2%) and daily commitments (51.5%). Employed caregivers (n = 26) experienced caregiver-related work impairment (92.0%) and absenteeism (53.8%). CONCLUSION: These findings from the Landmark Survey underscore the substantial and multidimensional burden of short bowel syndrome for patients and caregivers and highlight a critical unmet need for therapies that reduce complications from parenteral support and improve quality of life.