A QUALITATIVE STUDY EXPLORING THE BURDEN OF CROHN'S DISEASE AMONG CHILDREN AND ADOLESCENTS

Abstract Background Crohn’s disease (CD) is a type of inflammatory bowel disease that can occur at any age, though is most common between ages 15–35 years. CD symptoms can have a significant impact on health-related quality of life (HRQL). Although key symptoms and impacts of CD in adults are well-known, exploration of these in children and the level of agreement between child reported symptoms and impacts and those observed by parents/caregiver have not been well documented. Objectives Understand patients’ experiences of CD, including CD symptoms and the burden of living with CD, from the perspective of CD child and adolescent participants and parents/caregivers of children with CD. Methods Children (ages 5–11 years) and adolescents (ages 12–17 years) with CD and parents/caregivers of children with CD (ages 2–11 years) were recruited from US clinical sites. Qualitative semi-structured interview guides were developed, informed by published literature. Face-to-face and telephone concept elicitation interviews were conducted, audio-recorded and transcribed. Transcripts were analyzed using thematic methods facilitated by Nvivo. Results A total of 43 participants participated in this study. Preliminary results showed that pain, frequent bowel movements, diarrhea, and tiredness were spontaneously discussed by ≥60% of the participants, while blood in stool, cramping in abdomen, urgent bowel movement, nausea, and low appetite were spontaneously discussed by ≥30% of the participants. More than 15 other symptoms such as joint issues, abscess/fissures, and hives/rashes were each mentioned by at least one participant. In addition, ≥50% of the participants discussed impacts related to CD including school attendance, exercise/sports, eating and drinking limitations, and play and leisure. Conclusions The results from CE interviews demonstrate the clear burden of CD on children and adolescents.