P296 What happens to patients with paediatric onset inflammatory bowel disease (IBD) after transition to adult care and what is their view of the process?

Abstract

Background: Little data have been published regarding the outcomes of patients with paediatric onset IBD in the years after entering adult care or their perception of the process. This study aimed to identify the physical and psychosocial outcomes following transition in addition to patients’ perspectives. Methods: A database at the sole hospital in South Australia (SA) providing paediatric colonoscopy services was interrogated to identify paediatric patients diagnosed with IBD within SA who had turned 18 in the last 10 years and have transitioned to adult care. Patients diagnosed before age 18 at the Royal Adelaide Hospital and Flinders Medical Centre were also invited through the IBD clinics. Participants completed a questionnaire on demographic, disease specific data and their perspectives on the transition process. Results: 223 invitations yielded 46 completed replies, 8 optouts and 23 return-to-senders (27% overall response rate). Demographics: 52% were male and 57% were aged 18 23 years; 48% are currently single and 43% in a relationship. 88% (38/43) completed secondary education, 35 went on to further education; 76% are currently employed (cf 72.2% in the general population aged 20 24 years [1]) and work on average 29.8hrs/wk. Disease burden: Since diagnosis 33% have had IBD complications, and 32% required surgery. 72% had at least 1 admission during childhood with only 50% being admitted following transition to adult care. Most responders have utilised some members of a multidisciplinary team, however only 2 accessed a psychologist, despite 78% of respondents reporting psychological effects from their IBD. Transition data: Only 57% of responders had knowledge of their transition plan and 57% stated that they were not strongly prepared for transition. Only 26/41 felt that their transition process was structured, whilst 96% strongly agreed or agreed that this was important. The majority of respondents thought the timing of transition should depend on age 18 and if a new model of transition were established, the preferred method (of options offered) was a single clinic appointment attended by all key stakeholders at the time of transfer. Conclusions: This cohort has generally good control of their disease despite frequent admissions and flares in the paediatric years. They appear to be coping well based on educational activity and employment rates. However, there is a high prevalence of mood disturbances, with low usage of psychological support. In young people with IBD transitioning to adult care, only half knew their transition plan and only a small minority believe that the process was sufficiently structured.