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Few studies have examined the association between inflammatory bowel disease (IBD) severity, and humanistic, and economic burden. We addressed this gap using a unique real-world data source that links self-reported patient data from the US National Health and Wellness Survey (NHWS) to claims data. This cross-sectional study linked the 2015–2018 US NHWS data with medical, and pharmacy claims. Patients (≥18 years) who self-reported a physician diagnosis of IBD (ulcerative colitis [UC], or Crohn’s disease [CD]) in the NHWS, and had a medical or pharmacy claim indicating a possible diagnosis of IBD were included. Disease symptom severity was defined by a weighted symptom score and main outcomes include health-related quality of life (HRQoL), work productivity (WPAI), healthcare resource use (HRU), and associated costs. Overall, 687 patients with IBD were included, of which 347 were identified with UC and 340 with CD. Validation analysis showed that 94.7% of UC and 88.7% of patients with CD who self-reported diagnosis of CD or UC in NHWS had evidence of diagnosis and/or treatment patterns in claims. Patients with both UC and CD with moderate or severe symptoms had significantly lower HRQoL, increased work productivity loss, greater HRU, and associated costs compared with patients with mild symptoms. Patients with moderate/severe UC or CD experience substantial humanistic, and economic burden compared with patients with mild UC or CD. These factors should be considered within treatment goals for patients in order to provide holistic care beyond the treatment of objective markers or disease severity and symptoms alone.

The impact of symptom severity on the humanistic and economic burden of inflammatory bowel disease: a real-world data linkage study