Background: Ulcerative colitis (UC), a chronic gastrointestinal disease, presents during one’s most productive years. The primary symptoms of UC are well known, however, similarities and differences of lived experiences in adults and adolescents are not well characterized. Methods: To understand the patient experience of UC, in-depth, open-ended interviews were conducted in the US with 21 adults (20-70 years) and 14 adolescents (12-17 years) with UC. Eligibility and medical history were confirmed by clinician-report. A literature review informed the discussion guide to explore key symptoms and impacts on quality of life (QoL), and a preliminary disease model. Thematic analysis of transcripts was conducted with Atlas.ti software and used to refine the model. Results: UC disease activity over the past 6 months (clinician-report) for adults was: 24% mild, 38% moderate, 38% severe, and for adolescents: 64% mild, 29% moderate, 7% severe. Among adults, 53% were female and 66% white and among adolescents, 50% were female and 71% white. Participants in remission were excluded. All participants reported stomach/abdominal pain. Frequent bowel movements, diarrhea, blood in stools, sudden need for a bowel movement, stomach cramping, bloating, and feeling/passing gas were symptoms reported by ≥75% of participants. Embarrassment, diet limitations, planning around UC, worry/fear, anger, and social relationships, were impacts on QoL reported by ≥75% of participants. Two concepts were unique to a single age group: only adults discussed feeling dehydrated, while only adolescents discussed impact on school life. Five symptoms were identified as occurring during acute attacks only. The disease model (Figure 1) was refined to reflect interview findings. Conclusion: The CE interviews indicate that lived experiences are similar between adult and adolescent UC patients. The disease model highlights the overwhelming nature of UC and the negative impact on QOL from the patient’s perspective.
