Qualitative research to explore the symptoms and impacts experienced by children with ulcerative colitis

J Patient Rep Outcomes. 2020 Sep 7;4(1):75. doi: 10.1186/s41687-020-00238-1.


Background: Ulcerative Colitis (UC) is a chronic gastrointestinal disease that often presents during one's most productive years and is characterized by colon inflammation. Key symptoms and impacts in adults are well-known, however, experiences among pediatric populations have not been well documented. The purpose of this study was to understand the health-related quality of life and symptomatic experience of children (2-11 years) living with UC.

Methods: Qualitative, semi-structured face-to-face interviews were conducted. Children aged 5-11 years were interviewed, as well as their parents/caregivers in matched dyads. Parents/caregivers of children aged2-4 years were interviewed within a parent/caregiver-only cohort. All participants were recruited from the United States. Interviews were coded using thematic analysis.

Results: Key symptoms and impacts reflecting the lived experience of UC were identified following thematic analysis, generating a conceptual model. A total of 32 participants (20 parents/caregivers and 12 children) were interviewed. Results identified a substantial burden of UC in children. All children and parents/caregivers reported that they/their child experienced stomach/abdominal pain. Other symptoms discussed by over 75% were blood in stool, diarrhea/loose stools, stool urgency, incomplete evacuation, stool frequency, and feeling gassy/passing gas. The most frequently discussed impacts by over 75% of participants were on emotional and practical aspects, seriously affecting quality of life.

Conclusions: Qualitative analysis of the interviews identified a substantial burden of UC on children, with a profound impact on their lives. The symptomatic experience is reflective of adults and adolescents. A high level of agreement between parents/caregivers and children was demonstrated regarding the perception of the presence or absence of symptoms. Children aged 8-11 years showed higher levels of agreement with parents/caregivers than did younger children, indicating appropriateness of self-report of symptom data in the 8-11 years age group.

Keywords: Caregiver; Children; Experience; Parents; Qualitative; Ulcerative colitis.