Patient-Reported Impact of Irritable Bowel Disease and Desired Treatment Outcomes Desired Treatment Outcomes

Background: People with Crohn’s disease (CD) or ulcerative colitis (UC) often struggle not only with the physical aspects of IBD, but also the mental health, social and economic ramifications of the disease. Yet there persists resistance to gettingtreatment that can lessen the most troubling aspects of IBD. Understanding the holistic impact of IBD on patients and helping to alleviate barriers to starting effective medications is crucial to enabling IBD patients to live more fulfilling lives. Methods: In August 2023, an email invitation to an online survey was sent to US members of MyCrohnsAndColitisTeam, a social network of over 173,000 members. In total, 521 members completed the 34-question survey regarding experiences with IBD, its impact on everyday life as well as path to managing it. Results: The far-reaching impact of IBD was evident in the study. Most respondents reported that IBD has had a negative impact on overall quality of life (84% CD, 81% UC), interferes with their social life (72% CD, 76% UC%) and disrupts education/work (63% CD, 64% UC). These IBD patients have also found it hard to do everyday chores (67% CD, 59% UC) and to stay active (69% CD, 70% UC). The emotional toll of IBD manifested in feeling anxious (74% CD, 79% UC) or depressed (65% CD, 64% UC). The large majority are experiencing a range of troubling symptoms, including fatigue (83% CD, 77% UC) diarrhea (83% CD, 79% UC), abdominal pain (69% CD, 69% UC), joint pain (68% CD, 59% UC) and bloating (63% CD, 62% UC). When asked to indicate top three goals for treatment, results were consistent with symptom prevalence, including lessening fatigue (54% CD, 43% UC), reducing diarrhea (44% CD, 45% UC), lessening urgent need to use the bathroom (38% CD, 53% UC) and reducing abdominal pain (36% CD, 32% UC). Despite the fact that the large majority of respondents on biologics have benefited from their biologic treatment (90% CD, 89% UC), there remain obstacles to getting on a biologic among non-users, including concerns about side effects (49% CD, 43% UC), impact on immune system (41% CD, 42% UC), and long-term safety (39% CD, 35% UC). Given the more recent availability of biologics for UC patients, there is a higher lack of understanding of potential benefits of biologics (41% unaware among UC versus 26% for CD), fewer conversations with the gastroenterologist about benefits (21% UC versus 49% CD) and lower usage (35% UC versus a higher 60% CD). Conclusions: Understanding the physical, emotional, and quality of life impact of IBD along with patient desired outcomes can help gastroenterologists develop the most effective approach to treating their IBD patients. This includes listening to patient concerns about getting on specific treatments, helping them weigh the concerns against the benefits to treating the disruptive nature of IBD, including potential benefits of biologics.