Transition experience of young adults with inflammatory bowel diseases (IBD): a mixed methods study

Background Outcomes following transition can be poor; many young adults are ill prepared to take responsibility for their health care, older adolescents report incomplete understanding of medications, and parents remain largely responsible for their care. Good patient–provider relationships are associated with better adherence; however, the role of the relationship between post-transition patients and their providers has not been explored. The current study aimed to understand transition of young adults with inflammatory bowel diseases (IBD), the impact of the paediatric patient–provider relationship and what determines the adult patient–provider relationship. Methods This study examined the experience of young adults with Crohn's disease or ulcerative colitis (aged 18–30) after transition. Twenty-nine patients completed a 31-item online survey of their transition experience from paediatric to adult care. Responses were coded quantitatively and qualitatively, and qualitative responses were analysed by two independent raters. Results Positive themes regarding adult providers included independence, autonomy and trust, while negative themes included initial discomfort and confusing logistics. Five of six patients who reported ‘terrifying’ first visit experiences with their adult providers reported overall positive relationships. The earlier the diagnosis age, the less involved in medical decisions they were as an adult (r = 0.41, P = .03). Those who had a more positive experience with their paediatric providers were more likely to bring up confusion with their adult providers (r = .45, P = .04), and those who had a more positive experience with their adult providers were more likely to endorse collaborative medical decision-making (r = .57, P < .001). Conclusions Patients diagnosed with IBD at a young age may need extra education and self-management strategies, as they were less likely to exhibit behaviours indicative of a successful transition to adult care. Additionally, transition programme development may benefit from the post-transition perspective across chronic illness populations.