Transition Clinics: an Observational Study of Themes Important to Young People with Inflammatory Bowel Disease

Background: Transition from paediatric to adult services can be stressful and potentially disruptive for adolescents diagnosed with inflammatory bowel disease (IBD). This study aimed to ascertain transition-related factors relevant to young people in New Zealand.

Methods: Adolescents diagnosed with IBD prior to their 16 birthday were asked to participate in focus groups to generate transition-related themes. These themes were used to develop a questionnaire, which was then administered to a second group of young patients.

Results: Initial focus groups discussions generated several key themes: these included concerns about meeting new people in unfamiliar surroundings, the importance of shared clinics and assessments for transition readiness. The subsequent transition questionnaire was completed by 53 young people (28 female and 48 with Crohn's disease). The most commonly reported difficulty by those entering transition was meeting a new doctor. This and building a new relationship/trust were the main concerns of respondents who were preparing for or within a transition process. Parental assessment of illness and readiness to transition were not thought to be as important as other factors for determining readiness for transition. The character of their new adult gastroenterologist was the factor felt most likely to make transition easy.

Conclusions: The main concerns of these young patients with IBD, at various stages of transition, were about meeting a new team and building new relationships. Planning and conducting a structured transition process should consider these factors to optimise the process.