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The Capital Region of Denmark - a part of Copenhagen University Hospital
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Positive Predictive Value of Diagnostic Codes for Inflammatory Bowel Disease in the Danish National Patient Registry Among Individuals 50+ Years, Using Patient Records as Reference Standard

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  • Camilla Rye
  • Katrine Hass Rubin
  • Frederik Trier Moller
  • Mette Julsgaard
  • Tine Jess
  • Vibeke Andersen
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Purpose: Inflammatory bowel diseases (IBD), including Crohn's disease (CD) and ulcerative colitis (UC), are chronic diseases. The aim was to validate diagnoses of IBD among patients aged 50+ years in the Danish National Patient Registry (NPR) by comparison with patient medical records.

Patients and Methods: Men and women in the Diet, Cancer and Health (DCH) cohort were linked to NPR, and cases with a diagnosis of IBD and their respective hospital records were identified. Validation was performed by comparing patient medical records with information on discharge diagnoses of IBD from the NPR.

Results: Of 57,053 individuals in the DCH-cohort, 339 were registered with an IBD diagnosis in NPR, with 277 (82%) records available for review. Among 277 patients, the positive predictive values (PPVs) of one CD or UC registration in NPR were 78% for IBD overall, 51% for CD and 54% for UC. One hundred fifty-seven patients had at least two CD and/or UC registrations with PPVs of 90% for IBD overall, 65% for CD and 73% for UC. One hundred and two patients had at least three registrations with PPVs of 97% for IBD overall, 75% for CD and 88% for UC. 96% were diagnosed at a specialized department. Other diagnoses coded as IBD mostly included microscopic colitis, irritable bowel syndrome and cancer.

Conclusion: Validity of IBD diagnoses in the registry of individuals aged 50+ years increased with the number of registrations. It is recommended that these results are taken into consideration in future studies, especially in epidemiology research using NPR as a data source for patients diagnosed with IBD.

Original languageEnglish
JournalClinical Epidemiology
Volume13
Pages (from-to)335-344
Number of pages10
ISSN1179-1349
DOIs
Publication statusPublished - 2021

    Research areas

  • Danish National Patient Registry, Diagnosis, Diagnostic accuracy, Inflammatory bowel disease, Register study

ID: 66432337