Patient's Experience of Crohn's Disease: A Conceptual Model Based on Qualitative Interviews
Author(s)
Chloe Carmichael, PhD1, Sarah Knight, PhD1, Kyran Jones, PharmD2, Eva Hajdukova Brown, PhD3, Laurence Lucats, PhD3;
1Clarivate, London, United Kingdom, 2Austin, TX, USA, 3Sanofi, Gentilly, France
1Clarivate, London, United Kingdom, 2Austin, TX, USA, 3Sanofi, Gentilly, France
Presentation Documents
OBJECTIVES: Symptoms linked to Crohn’s Disease (CD) can significantly impair patients' health-related quality of life (HRQoL). This study aimed to identify the symptoms and impacts experienced by adults in the US living with CD to develop a patient-centric conceptual model (CM) of CD.
METHODS: This qualitative study included interviews with adults diagnosed with moderate-severe CD and expert clinicians from the US. Online, IRB-approved semi-structured interviews were conducted to explore CD symptoms and their impact on patients' HRQoL.
RESULTS: Twelve patients (mean age: 40.3 years, n=8 females, n=10 White, 2 Black, 1 Asian, n=4 with high school education) and six gastroenterologists (average of 23.5 years in practice) participated. Patients identified key symptoms, including bowel urgency (n=9), abdominal pain (n=8), diarrhea (n=7), frequent bowel movements (n=6) and rectal bleeding (n=5). Extraintestinal symptoms included fatigue (n=11) and anemia (n=4). The key symptoms of CD were corroborated by clinicians, who described additional extraintestinal manifestations including skin abnormalities, eye diseases, and rheumatological signs. Patients reported varied HRQoL impacts; the most frequently reported were, feeling unable to leave the house (n=10), increased planning when leaving the house (n=9) and depression/low mood (n=9). Clinicians described similar impacts, emphasizing the need for patients to check the nearest bathroom and the emotional impacts such as depression and anxiety. Patient reported coping strategies included dietary changes (n=4), applying localized heat (n=3) and pain relief (n=3). The final CM presents an overview of the patient experience, reflecting 19 gastrointestinal symptoms, 16 nutrition-related complications or extraintestinal symptoms, 5 pain-associated symptoms, 10 broad impact domains, 6 symptom-specific coping strategies, and 4 general coping strategies.
CONCLUSIONS: CD impacts most aspects of patients’ HRQoL. The CM provides an understanding of CD and highlights a broad range of symptoms, impacts and coping strategies, providing a basis for targeted future treatment development and more effective patient-centered care strategies and options.
METHODS: This qualitative study included interviews with adults diagnosed with moderate-severe CD and expert clinicians from the US. Online, IRB-approved semi-structured interviews were conducted to explore CD symptoms and their impact on patients' HRQoL.
RESULTS: Twelve patients (mean age: 40.3 years, n=8 females, n=10 White, 2 Black, 1 Asian, n=4 with high school education) and six gastroenterologists (average of 23.5 years in practice) participated. Patients identified key symptoms, including bowel urgency (n=9), abdominal pain (n=8), diarrhea (n=7), frequent bowel movements (n=6) and rectal bleeding (n=5). Extraintestinal symptoms included fatigue (n=11) and anemia (n=4). The key symptoms of CD were corroborated by clinicians, who described additional extraintestinal manifestations including skin abnormalities, eye diseases, and rheumatological signs. Patients reported varied HRQoL impacts; the most frequently reported were, feeling unable to leave the house (n=10), increased planning when leaving the house (n=9) and depression/low mood (n=9). Clinicians described similar impacts, emphasizing the need for patients to check the nearest bathroom and the emotional impacts such as depression and anxiety. Patient reported coping strategies included dietary changes (n=4), applying localized heat (n=3) and pain relief (n=3). The final CM presents an overview of the patient experience, reflecting 19 gastrointestinal symptoms, 16 nutrition-related complications or extraintestinal symptoms, 5 pain-associated symptoms, 10 broad impact domains, 6 symptom-specific coping strategies, and 4 general coping strategies.
CONCLUSIONS: CD impacts most aspects of patients’ HRQoL. The CM provides an understanding of CD and highlights a broad range of symptoms, impacts and coping strategies, providing a basis for targeted future treatment development and more effective patient-centered care strategies and options.
Conference/Value in Health Info
2025-05, ISPOR 2025, Montréal, Quebec, CA
Value in Health, Volume 28, Issue S1
Code
PCR179
Topic
Patient-Centered Research
Topic Subcategory
Patient Behavior and Incentives, Patient Engagement, Patient-reported Outcomes & Quality of Life Outcomes
Disease
SDC: Gastrointestinal Disorders