Year: 2025
Type: conference-abstract
Abstract: 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. Understanding the holistic impact of IBD on patients is crucial to enabling IBD patients to live more fulfilling lives. METHOD In July 2024, an email invitation to an online survey was sent to US members of MyCrohnsAndColitisTeam, a social network for people living with IBD. In total, 280 members completed the survey regarding experiences with IBD, its impact on everyday life and information needed to help navigate IBD. 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 (87% CD, 91% UC), interferes with their social life (77% CD, 78% UC%), disrupts education/work (65% CD, 59% UC), interferes with relationships (61% CD, 60% UC) and leads to embarrassment (60% CD, 70% UC). ““This disease has stolen my career, my family, my finances, my friends.” “Never knowing when I will have a bout. Not being comfortable going to social events.” The majority find it easy to access tests, procedure and treatments (74% CD, 65% UC) and find a caring doctor (56% CD, 58% UC). Yet being able to afford treatment (42% CD, 37% UC) and finding reliable information about IBD (39% CD, 43% UC) is more problematic. When asked what type of information would be most helpful in navigating IBD, top choices were aging with IBD (74% CD, 69% UC), understanding what symptoms indicate about overall health (59% CD, 52% UC), tips for managing IBD (57% CD, 72% UC), medications (55% CD, 68% UC), understanding symptoms of IBD (52% CD, 47% UC) and diet and exercise tips to help manage IBD (51% CD, 67% UC). CONCLUSIONS Understanding the physical, emotional, and quality of life impact of IBD can help gastroenterologists develop the most effective approach to treating their IBD patients. Additionally, helping patients understand what to expect short and longer-term and approaches for managing IBD can help create better patient outcomes. The Far-Reaching Impact of Living With IBD Managing IBD
Source: Inflammatory Bowel Diseases
Authors: Dianna Cronin, Nathan Brown, Beth Schneider
Language: English
Topic: Inflammatory Bowel Disease
Subfield: Genetics
Domain: Life Sciences
Open Access status: bronze
OpenAlex ID: W4408128233