Abstract
Introduction: Although inflammatory bowel disease (IBD) can take an indolent course with periods of remission, more often than not it is a progressive disease. Complications (strictures and fistulas) and severe disease lead to increases in medical therapy, hospitalisations, and surgery. Improved understanding of the resource use and long-term outcomes of newly diagnosed patients with IBD under current medical therapy can be used to plan health service provision and provide guidance to patients and physicians.
Methods: Prospective population-based data on all patients with a confirmed diagnosis of IBD in 2014 (n=205) was collected as part of the Canterbury IBD project. Nineteen were aged <17 years at diagnosis and the overall mean age was 38 years. 134 (65%) patients had Crohn’s disease (CD), 69 (34%) ulcerative colitis (UC) and 2(1%) had inflammatory bowel disease unclassified (IBDU). With ethical approval (HD23/054) the medical records of these patients were examined for medication use, surgery, hospitalisation, mortality, and disease progression (using the Montreal Phenotype) in the 10 years since their diagnosis.
Results: Thirteen (6%) of the patients in the cohort died during follow-up at an average age of 70 years. Nineteen (9%) patients were lost to follow-up or no longer appeared to have IBD. In the cohort, at least one surgery 26 (13%) or hospitalisation 70 (34%) was common. 111 (54%) had ever used an immunodulator, 60 (35%) ever used a biologic medication. Corticosteroids were ever used by 93 (45%) and exclusive enteral nutrition (EEN) by 16 (8%), predominantly in younger patients. The Montreal phenotype of most patients remained stable from diagnosis though 21 (10%) increased in extent, location or behaviour.
Conclusions: This population- based cohort diagnosed in Canterbury, New Zealand in 2014 was characterised by high healthcare resource use. The cohort had a higher proportion of patients with CD which may have contributed to this. IBD is a chronic disease typically diagnosed in early adulthood, with low rates of mortality, so this burden to the health system is expected to continue.