Exploring Beyond the Gut: A Qualitative Study of Extraintestinal Symptoms in Ulcerative Colitis and Crohn's Disease
Author(s)
Sarah Knight, MSc. Public Health Research1, Eva Hajdukova Brown, PhD2, Greg Davis, MSc Psychology1, Laurence Lucats, Doctor of Veterinary Medicine3, Kyran Jones, PharmD4.
1Clarivate, London, United Kingdom, 2Sanofi, Gentilly, France, 3Sanofi, Chilly-Mazarin, France, 4Sanofi, Austin, TX, USA.
1Clarivate, London, United Kingdom, 2Sanofi, Gentilly, France, 3Sanofi, Chilly-Mazarin, France, 4Sanofi, Austin, TX, USA.
OBJECTIVES: Extraintestinal manifestations of Inflammatory Bowel Diseases (IBD) affect multiple organs, complicating both Crohn's Disease (CD) and Ulcerative Colitis (UC). These symptoms, add to patients' disease burden from intestinal symptoms and impact their quality of life and the treatment approaches. This study aimed at exploring the patients' experience of these symptom.
METHODS: This qualitative study included interviews with adults who had moderate-severe UC or CD and clinicians from the United States. Online, IRB-approved semi-structured interviews were conducted to explore the prevalence and variety of extraintestinal symptoms experienced by patients and observed by clinicians.
RESULTS: Twelve patients with UC (39.5 years average age, 7 female, average time since diagnosis 5.3 years), 12 patients with CD (40.3 years average age, 8 female, average time since diagnosis 10.3 years) and six gastroenterologists with average of 23.5 years in practice participated in the interview. Patients with UC (58%) reported extraintestinal symptoms, notably fatigue (n=9), weight loss (n=4), fever (n=2), back pain, joint pain, and anemia (n=1 each). Patients with UC rated fatigue as the most bothersome extraintestinal symptom (8.4 on 0-10 scale). Clinicians identified anemia, weight loss and fever (n=6 each) joint pain, tachycardia (n=3 each), and dehydration/electrolyte imbalance (n=3) in patients with UC. All patients with CD experienced extraintestinal symptoms, like fatigue (92%), anemia, weight loss (n=4 each), dizziness (n=3), and other symptoms including feeling cold, increased infections, dehydration, fever, infertility, malaise, and skin abnormalities (n=2 each). Patients with CD rated fatigue as the most bothersome extra-intestinal symptom (8.3 on 0-10 scale). Clinicians noted dermatological issues (n=6), fever, chills, eye diseases, and rheumatological manifestations (n=3 each) in patients with CD.
CONCLUSIONS: This study demonstrates the systemic impact of extraintestinal IBD symptoms, highlighting the need for comprehensive care and enhanced extra-intestinal symptom monitoring to optimize disease management using existing treatment and drugs in development.
METHODS: This qualitative study included interviews with adults who had moderate-severe UC or CD and clinicians from the United States. Online, IRB-approved semi-structured interviews were conducted to explore the prevalence and variety of extraintestinal symptoms experienced by patients and observed by clinicians.
RESULTS: Twelve patients with UC (39.5 years average age, 7 female, average time since diagnosis 5.3 years), 12 patients with CD (40.3 years average age, 8 female, average time since diagnosis 10.3 years) and six gastroenterologists with average of 23.5 years in practice participated in the interview. Patients with UC (58%) reported extraintestinal symptoms, notably fatigue (n=9), weight loss (n=4), fever (n=2), back pain, joint pain, and anemia (n=1 each). Patients with UC rated fatigue as the most bothersome extraintestinal symptom (8.4 on 0-10 scale). Clinicians identified anemia, weight loss and fever (n=6 each) joint pain, tachycardia (n=3 each), and dehydration/electrolyte imbalance (n=3) in patients with UC. All patients with CD experienced extraintestinal symptoms, like fatigue (92%), anemia, weight loss (n=4 each), dizziness (n=3), and other symptoms including feeling cold, increased infections, dehydration, fever, infertility, malaise, and skin abnormalities (n=2 each). Patients with CD rated fatigue as the most bothersome extra-intestinal symptom (8.3 on 0-10 scale). Clinicians noted dermatological issues (n=6), fever, chills, eye diseases, and rheumatological manifestations (n=3 each) in patients with CD.
CONCLUSIONS: This study demonstrates the systemic impact of extraintestinal IBD symptoms, highlighting the need for comprehensive care and enhanced extra-intestinal symptom monitoring to optimize disease management using existing treatment and drugs in development.
Conference/Value in Health Info
2025-11, ISPOR Europe 2025, Glasgow, Scotland
Value in Health, Volume 28, Issue S2
Code
PCR90
Topic
Clinical Outcomes, Epidemiology & Public Health, Patient-Centered Research
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes
Disease
Gastrointestinal Disorders