International Perspectives on Management of Inflammatory Bowel Disease: Opinion Differences and Similarities Between Patients and Physicians From the IBD GAPPS Survey

Abstract

Background: Inflammatory bowel diseases (IBD), including Crohn disease (CD) and ulcerative colitis (UC), are complex disorders with multiple comorbidities. We conducted international patient and physician surveys to evaluate current experiences and perceptions of patients with CD or UC and physicians who treat IBD.

Methods: The IBD Global Assessment of Patient and Physician Unmet Need Surveys comprised a patient survey and a physician survey, fielded in North America and Europe between August 16, 2019, and November 10, 2019. Adults with CD or UC (targeted 1:1 ratio) were recruited from physicians, patient advocacy groups, and recruitment panels; physicians were recruited by recruitment agencies and panels.

Results: In total, 2398 patients with IBD (1368 CD, 1030 UC) and 654 physicians completed surveys. Anxiety and depression were the most common comorbidities among patients with IBD. Patients and physicians were generally aligned on treatment goals and patient-physician communication. Patients with IBD reported high quality-of-life impact by rectal urgency and need to use the toilet, which were rated as lower-impact by physicians. Patients defined remission based on symptoms; physicians defined remission based primarily on clinical tests. Patients expected current treatments to control their disease for a longer duration than did physicians. Patients expressed more concern about corticosteroid use compared with physicians; many physicians reported prescribing corticosteroids for more than 4 months per year in some patients.

Conclusions: Patients could benefit from education about disease remission and expectations for current therapies. High corticosteroid use is concerning to patients, and physicians should minimize the use of corticosteroids for extended periods of time.

Keywords: Crohn disease; inflammatory bowel disease; ulcerative colitis.

FIGURE 1.

Perceptions of burden of disease. A, IBD symptoms reported by patients with the greatest frequency in the past month or ever. B, IBD symptoms reported by patients as having high severity (left panels = CD; right panels = UC). C, Symptoms reported by patients and physicians to have the greatest impact on QOL (upper panel = CD; lower panel = UC).

FIGURE 2.

Patient and physician expectations with current medications. A, Percentages of patients with CD or UC reporting the expected duration of disease control with their current treatment. B, Percentage of patients with CD (upper panel) or UC (lower panel) expressing a belief that their current treatment was long-lasting. C, Physician-reported expectations for treatment durability (overall). D, Physician-reported beliefs regarding the durability of current treatments for their patients with CD (upper panel) and patients with UC (lower panel). E, Physician-estimated duration of corticosteroid-free remission (overall). F, Physician-estimated months of corticosteroid use required to maintain disease control per year with current treatments in patients with CD (left) and patients with UC (right). IL indicates interleukin; JAK, Janus kinase.

FIGURE 3.

Selection of treatment for IBD. A, Most common reasons provided by physicians and patients with CD or UC for choice of IBD treatment. B, Risk/benefit profiles and net benefit (%) for current treatments. C, Degree of concern expressed by patients with CD or UC regarding long-term safety of medications. D, Degree of concern expressed by patients with CD or UC regarding adverse effects with current medications. E, Percentages of patients with CD or UC who opted against specific treatments because of adverse effects. F, Percentage of physicians, patients with CD, and patients with UC reporting level of concern with duration of corticosteroid use. IL indicates interleukin; IM, immunomodulator; JAK, Janus kinase.

FIGURE 4.

Treatment goals. A, Disease-related goals of IBD therapy reported by physicians and patients (left panels = CD; right panels = UC). B, QOL-related goals of IBD therapy reported by physicians and patients (left panels = CD; right panels = UC). C, Satisfaction with treatment goals as reported by patients (left panel) and physicians (right panel) (upper bars = CD; lower bars = UC). D, Sources of information used by physicians and patients with CD or UC. HCP, healthcare practitioners.