S0827 Unmet Needs of Patients With IBD: Patient Perspectives on the Impact of Disease on Quality of Life

Abstract

INTRODUCTION: Inflammatory bowel disease (IBD) refers to diseases characterized by chronic inflammation of the gastrointestinal (GI) tract, including Crohn’s disease (CD) and ulcerative colitis (UC). Major areas of unmet need for many IBD patients include the frequency and severity of symptoms that interfere with day-to-day activities, and the impact symptoms have on work, education, relationships, and/or emotional well-being. We sought to better understand the daily symptom burden of IBD and the resulting impact on patient quality of life. METHODS: An anonymous 19-question online survey was distributed through the social media network MyCrohnsAndColitisTeam.com between November 11 and November 18, 2019 to persons (aged ≥19 years) who self-identified as having CD or UC, living in the United States. RESULTS: A total of 302 patients completed the survey (177 CD, 125 UC), with the majority being female (74% CD, 78% UC), and aged 50 or older (73% CD, 82% UC). The most frequently reported problematic IBD symptoms included moderate to severe abdominal pain (56% CD, 46% UC), diarrhea (62% CD, 67% UC), and fatigue (68% CD, 63% UC) (Figure 1). Most respondents reported that the frequency and severity of their IBD symptoms had a moderate to severe impact on their daily life (80% CD, 81% UC), including limitation of social activities (77% CD, 71% UC), travel (69% CD, 66% UC), and time outside of the home (66% CD, 68% UC), including the ability to work (Figure 2). In addition, patients reported that IBD had a negative impact on their emotional well-being, causing anxiety (82% CD, 81% UC), depression (80% CD, 71% UC), and embarrassment (70% CD & UC), as well as feelings of inadequacy (41% CD, 35% UC) and low self-esteem (50% CD, 46% UC). CONCLUSION: In addition to the burden of the IBD diagnosis and treatment, the disease’s impact on day-to-day physical, practical, and emotional life causes additional stress and burden on patients and may be underestimated by the treating medical team. The results of this survey underscore the importance of a holistic approach to treating IBD, which relies upon frequent and effective communication between the patient and medical team about the emotional and physical burden of IBD. A better mutual understanding of the scope and pervasiveness of the disease burden is essential to improving treatment decisions and patients’ quality of life.Figure 1.: Most Problematic Symptoms for Persons with Living with Crohn’s Disease or Ulcerative Colitis.Figure 2.: Impact of IBD Symptoms on Social and Family Life and Education and Work Activities.Figure 3.: Emotional Impact of Living with Crohn’s Disease or Ulcerative Colitis.