Healthcare transition and inflammatory bowel disease: the challenges experienced by young adults after transfer from paediatric to adult health services

In recent years, there has been a steady increase in research on healthcare transition for patients with Inflammatory Bowel Disease (IBD). However, the focus has been mainly on preparing young people for the transfer to adult health services. Consequently, there is limited information on the post-transfer challenges and perspectives of these young patients, as they also transition into young adulthood. A qualitative study was conducted using in-depth semi-structured interviews to explore the post-transfer experiences of 12 young adults (18-25 years old) with paediatric-onset IBD. The interviews were audiotaped, transcribed and analysed using thematic analysis. Four over-arching themes were generated, describing the numerous and diverse post-transfer challenges experienced by participants: Living with IBD, Psychosocial Adversity, Maintaining Wellbeing, and Adjusting to Adult Health Services. The symptom impact was discussed extensively, especially in relation to fatigue. Numerous non-IBD psychosocial stresses were reported, whilst illness-related stressors were mentioned to a lesser extent. Participants demonstrated a pragmatic acceptance of the necessity for medication, however barriers to adherence persisted. The limited use of strategies to manage stress and negative emotions was highlighted, as was the continued reliance on parental support. The move to adult health services was initially confronting, however, participants eventually adjusted. Healthcare transition interventions which extend beyond the current preparatory paediatric focus are required, to provide ongoing age-appropriate, post-transfer support for young people, as they encounter the challenges of young adulthood, whilst living with IBD.