PGI53 A QUALITATIVE STUDY EXPLORING THE BURDEN OF ULCERATIVE COLITIS AMONG CHILD, ADOLESCENT, AND ADULT PATIENTS

Abstract

To explore the similarities and differences in UC symptoms and impacts across various age groups (children, adolescents, and adults) and develop a disease model. Participants with UC were recruited from US clinical sites to participate in-depth, open-ended face-to-face concept elicitation (CE) interviews. Two studies were conducted, one interviewing parents of children aged 2–4 years, children aged 5-11 years, and their parents. The other interviewed adolescents (aged 12–18 years) and adults (aged 18+ years). Interviews were audio-recorded and transcribed. Interview transcripts were analyzed using thematic analysis. Sample recruited: 8 parents of 2–4-year olds, three 5–7-year olds and their parents, nine 8–11-year olds and their parents, 14 adolescents (12–17 years), and 21 adults (20–70 years). There was a high level of qualitative agreement between cohorts with nearly all symptoms being discussed by children, adolescents, and adults and also observed by the child’s parents. The most frequently discussed symptoms (discussed by ≥75% of the participants in each cohort) were similar across all cohorts. These were: blood in stool, urgent bowel movement, frequent bowel movements, diarrhea, and incomplete evacuation. The only symptom reported by all participants [children (their parents), adolescents, and adults] was stomach/abdominal pain. Feeling dehydrated was discussed only by adult participants (4/21) and was the only symptom not discussed by children, their parents or adolescents. Impacts due to UC were also regularly discussed across all cohorts with only a few impacts being age specific (i.e., work for adults and school for children). However, impact on activities of daily living was only discussed by adults. The results from the CE interviews show the clear burden of UC and that this is similar across all age groups allowing for a unified disease model to be developed.