Background: Inflammatory bowel disease (IBD) presents in childhood in up to 15% of cases. Paediatric onset IBD (PIBD) has a more extensive and dynamically changing phenotype and a faster rising incidence than adult-onset IBD. We aimed to evaluate rates of treatment refractory disease at and then following transition to adult services.
Methods: A prospective PIBD database identified a cohort of all patients discharged from our regional service since 01/01/07. A retrospective study of patients graduating from paediatric to adult IBD services through a transition process, transition event (single joint clinic) or transfer until 31/12/13 was conducted with post transfer follow-up (FU) data at a minimum of 1 year to last adult FU (LAFU). Pan-treatment exposure (PTE) was defined as exposure to all of azathioprine (AZA) or mercaptopurine (MP), methotrexate (MTX), infliximab (IFX) and adalimumab (ADA). Pan-treatment refractory (PTR) disease as those refractory (primary non-response [PNR], loss of response [LOR] or intolerance) to all of these therapies. We used the Montreal classification to describe disease location (L) and behaviour (B) phenotypes. Psychological co-morbidity was defined as a formal psychiatric diagnosis, regular psychiatry/psychology input (or intention for this if repeated family refusal), documented anxiety or depression and deliberate self-harm.
Results: 138 patients graduated to adult services, 69% (95/138) had Crohn's disease (CD); 59% (56/95) male, 76% (72/95) with extensive disease (L3 or L3+L4) and 22% (21/95) B2 or B3 disease at time of transfer. Median (IQR) age at transfer 17.8 years (17.3, 18.4) and median (IQR) disease duration at transfer 5.4 years (4.6, 7.6). Median (IQR) length of FU post-transfer was 3.3 years (2.1, 5.1). 12% (11/95) had PTE with 4% (4/95) having PTR disease by time of transfer. PTE rates increased significantly to 26% (21/82) p=0.009 at LAFU and PTR disease to 18% (15/82) p=0.003; 13 patients lost to follow-up. 90% (19/21) of those with PTE had extensive disease and 48% (10/21) had B2 or B3 disease by LAFU. 80% (12/15) patients with PTR disease required bowel resection or a defunctioning stoma by LAFU, compared with 37% (30/82) of the whole CD cohort p=0.002. 24% (5/21) of those with PTE had significant psychological co-morbidity by LAFU.
Conclusions: Our novel data show that pan-treatment exposure in paediatric-onset CD is already significant by time of transfer to adult services and continues to increase to affect 26% of this regional cohort within a relatively short period of adult follow-up. 18% of paediatric-onset CD patients have failed all medical treatments by LAFU and 71% with PTE require resectional or defunctioning surgery to manage disease.