P675 Natural history of paediatric IBD around transition to adult services: a regional cohort study
V. Merrick*1, P. Henderson1, N. Kennedy2, P. Rogers3, I. Arnott4, J. Satsangi2, D. Wilson1
1University of Edinburgh, Child Life and Health, Edinburgh, United Kingdom, 2University of Edinburgh, Gastrointestinal Unit, Centre for Genomic and Experimental Medicine, Edinburgh, United Kingdom, 3Royal Hospital for Sick Children, Paediatric Gastroenterology, Edinburgh, United Kingdom, 4Western General Hospital, Gastrointestinal Unit, Edinburgh, United Kingdom
Effective transition of young people with paediatric-onset IBD (PIBD) is essential, but there is a paucity of data in this area. We aimed to describe PIBD patient transition in SE Scotland (SES) through natural history (disease activity, therapy escalation and service utilisation) both at the point of transfer and post-transition.
Our prospective PIBD database provided all patients discharged from our regional service since 01/01/09. This retrospective cohort study is of patients leaving due to transition (graduation from paediatric to adult IBD services through a transition process, a transition event [single joint clinic] or transfer) until 30/09/13, with follow-up (FU) data collected at a minimum of 1yr post-transition; disease location/severity was assessed by Montreal classification/Physician Global Assessment (PGA).
83 patients transitioned (60 CD, 13 UC and 10 IBDU) with median age at transition of 18.0yrs (IQR 17.6, 18.4). 82% (68/83) of patients were in steroid-free remission (SFR) at transfer and 5% (4/83) had moderate-severe disease (MSD). 72% (43/60) of CD patients had ileocolonic involvement (L3) and 55% (33/60) pan-enteric disease (L3+L4); 74% (17/23) of UC/IBDU patients had extensive disease (E3). 78% (65/83) had exposure to thiopurines, 47% (39/83) to methotrexate (MTX) and 25% (21/83) to anti-TNF therapy in paediatric services; only 19% (16/83) had never had immunosuppression. 10% (8/83) had major IBD-related surgery prior to transfer and 3 patients (4%) had pan-treatment refractory IBD (primary non-response, complete loss of response or non-recoverable intolerance to all of thiopurines, MTX, infliximab and adalimumab). Median follow-up post transition was 2.7yrs (IQR 1.6, 4.0). At last adult FU 6 patients had transferred out of SES and 3 had defaulted from clinic. 85% (63/74) of those remaining were in SFR; 8% (6/74) had MSD. The rates of ileocolonic CD (L3) and pan-enteric CD (L3+L4) had already increased to 75% (40/53) and 60% (32/53) respectively; 67% (14/21) of UC/IBDU patients had extensive disease (E3). 13% (2/16) patients had their first thiopurine exposure, 3% (1/37) their first MTX exposure and 19% (10/54) their first anti-TNF exposure in adult services. 12% (9/74) had major IBD-related surgery in adult services; the pan-treatment refractory IBD rate increased to 14% (10/73). One patient died of metastatic cholangiocarcinoma 3.5 yrs post transition.
PIBD patients have significant disease at transfer to adult services with 25% having required anti-TNF therapy and 81% at least one immunosuppressant. Progression of disease severity continues; 19% of patients required their first anti-TNF agent in adult services and the rate of pan-treatment refractory IBD more than trebled to 14%.