Patient's Experience of Ulcerative Colitis: A Conceptual Model Based on Qualitative Interviews
Author(s)
Stephanie McKee, MSC1, Greg Davis, MSC1, Eva Hajdukova Brown, PhD2, Kyran Jones, PharmD3, Laurence Lucats, PhD2;
1Clarivate, London, United Kingdom, 2Sanofi, Gentilly, France, 3Austin, TX, USA
1Clarivate, London, United Kingdom, 2Sanofi, Gentilly, France, 3Austin, TX, USA
Presentation Documents
OBJECTIVES: Ulcerative Colitis (UC) can significantly impair patients' health-related quality of life (HRQoL). This study aimed to identify the symptoms and impacts experienced by adult patients in the US living with UC to develop a comprehensive conceptual model (CM) of UC.
METHODS: This qualitative study included interviews with adults diagnosed with moderate-severe UC and expert clinicians from the US. Online, IRB- approved semi-structured interviews were conducted to explore UC symptoms and their impact on patients' HRQoL.
RESULTS: Twelve patients (mean age: 39.5 years, n=7 female, n=7 White, 3 Black, 2 Asian, n=5 with graduate/post-graduate degree) and six gastroenterologists (average of 23.5 years in practice) participated. Patients identified symptoms such as rectal bleeding (n=12), bowel urgency (n=9), fatigue (n=9), abdominal pain (n=9) and diarrhea (n=8). Extraintestinal symptoms including weight loss (n=4) and fever (n=2) were also reported. All patient reported experiences were generally corroborated by gastroenterologists. Patients reported coping strategies including diet changes to avoid triggering symptoms (n=6) and receiving support from family/friends (n=7). The final CM includes 18 gastrointestinal symptoms, 9 nutrition-related complications and extraintestinal symptoms, 4 pain-related symptoms and 3 energy-related symptoms. The CM also includes impacts to physical functioning such as needing to rest more (n=9), negative emotional experiences like anxiety and worry (n=10) and reduced ability to work at full capacity (n=7). Additionally, impacts to activities of daily living, hobbies and leisure activities, sleep, diet, social life, and relationships with family are presented in the CM.
CONCLUSIONS: UC impacts most aspects of patients’ HRQoL. The CM provides an understanding of UC, highlighting a broad range of symptoms, impacts and coping strategies. This demonstrates the complex and multifaceted nature of UC. This CM will inform healthcare providers about patients' experience of UC, and may help guide future treatment development, potentially resulting in more effective patient-centered care strategies and treatment options.
METHODS: This qualitative study included interviews with adults diagnosed with moderate-severe UC and expert clinicians from the US. Online, IRB- approved semi-structured interviews were conducted to explore UC symptoms and their impact on patients' HRQoL.
RESULTS: Twelve patients (mean age: 39.5 years, n=7 female, n=7 White, 3 Black, 2 Asian, n=5 with graduate/post-graduate degree) and six gastroenterologists (average of 23.5 years in practice) participated. Patients identified symptoms such as rectal bleeding (n=12), bowel urgency (n=9), fatigue (n=9), abdominal pain (n=9) and diarrhea (n=8). Extraintestinal symptoms including weight loss (n=4) and fever (n=2) were also reported. All patient reported experiences were generally corroborated by gastroenterologists. Patients reported coping strategies including diet changes to avoid triggering symptoms (n=6) and receiving support from family/friends (n=7). The final CM includes 18 gastrointestinal symptoms, 9 nutrition-related complications and extraintestinal symptoms, 4 pain-related symptoms and 3 energy-related symptoms. The CM also includes impacts to physical functioning such as needing to rest more (n=9), negative emotional experiences like anxiety and worry (n=10) and reduced ability to work at full capacity (n=7). Additionally, impacts to activities of daily living, hobbies and leisure activities, sleep, diet, social life, and relationships with family are presented in the CM.
CONCLUSIONS: UC impacts most aspects of patients’ HRQoL. The CM provides an understanding of UC, highlighting a broad range of symptoms, impacts and coping strategies. This demonstrates the complex and multifaceted nature of UC. This CM will inform healthcare providers about patients' experience of UC, and may help guide future treatment development, potentially resulting in more effective patient-centered care strategies and treatment options.
Conference/Value in Health Info
2025-05, ISPOR 2025, Montréal, Quebec, CA
Value in Health, Volume 28, Issue S1
Code
PCR232
Topic
Patient-Centered Research
Topic Subcategory
Patient Engagement, Patient-reported Outcomes & Quality of Life Outcomes
Disease
SDC: Gastrointestinal Disorders