Young people with Inflammatory Bowel Disease: the relationship with their disease, identity, and illness perceptions and healthcare at a time of transition

Background: Young people living with inflammatory bowel disease (IBD) face a range of challenges as they develop through their adolescent years in to adulthood, alongside transition from child to adult healthcare services. Psychological morbidity in young people with IBD is increased, but there is little understanding of the experiences, risk factors and impacts of this into adulthood. Aims: To examine and evaluate the psychological wellbeing and illness perceptions of young people aged 16-21 years living with IBD, in order to better understand the challenges of growing-up with IBD and transitioning from child to adult healthcare leading to service delivery recommendations. Methods: 1. Systematic literature review of risk factors and impacts of psychological morbidity in young people aged 10-24 years living with IBD. 2. Prospective quantitative questionnaire based study of the prevalence of psychological morbidity and the relationship between illness perceptions and other risk factors and in 121 young people with IBD aged 16-21 years, with 100 young people participating 1 year later. 3. Qualitative study using Interpretative Phenomenological Analysis with interviews of 14 young people with IBD aged 16-21 years investigating their lived experiences with IBD. 4. Qualitative study using Interpretative Phenomenological Analysis with interviews of 19 young people with IBD aged 16-21 years regarding the experiences of transitioning from child to adult IBD healthcare services. Findings: Young people living with IBD have a high prevalence of psychological morbidity, which is stable over time. Predictive factors for psychological morbidity included being female, active disease and negative illness perceptions. Young people with IBD have highly individual experiences based on symptoms, healthcare experiences and personal factors. The experiences often result in isolation and revised life goals. Transition from child to adult services is empowering but with a sense of accelerated entry into adulthood. Young people can feel passive and lack personal control during the process of transition. Conclusions: Recommendations from this work include promotion of an individualised, flexible and developmentally appropriate approach to healthcare for young people with IBD. Young people with IBD are at risk of psychological morbidity and illness perceptions may be an appropriate target for psychological interventions.