Validation of date of diagnosis and disease location of inflammatory bowel disease in the Danish National Patient Registry and the Danish Pathology Registry using a regional cohort.

Abstract

Objectives: The Danish National Patient Registry (NPR) is an obvious source for investigating the period preceding inflammatory bowel disease (IBD). However, accuracy of diagnosis date in the NPR is unknown. Further, assessment of IBD location in the NPR has shown inconsistent results. We identified date of IBD diagnosis in the NPR and captured IBD disease location from the Danish Pathology Registry (DPR) and validated both against the North Denmark IBD cohort (NorDIBD) as the gold standard.

Materials and methods: We identified all patients with incident IBD in NorDIBD between 2000 and 2020. We compared diagnosis date in the NPR with the date in NorDIBD. Next, we inferred disease location from pathology codes in the DPR and compared with disease location in NorDIBD.

Results: We identified 3163 patients with incident IBD. We found a mean of 8 (95% CI -36, 53) and 62 (95% CI 27, 96) days between date of diagnosis in the NPR and NorDIBD for Crohn's disease (CD) and ulcerative colitis (UC), respectively. We could infer disease location from pathology codes in 63% of patients with CD and 56% of UC patients. We found high sensitivity for colonic disease in CD and for ulcerative proctitis in UC.

Conclusion: The date of IBD diagnosis in the NPR showed high validity. IBD location could be inferred via pathology codes for approximately 60% of patients with IBD, with high validity for colonic disease in CD and proctitis in UC. These findings are useful in future epidemiological studies in IBD.