Validity of data in the Danish Colorectal Cancer Screening Database

BACKGROUND In Denmark, a nationwide screening program for colorectal cancer was implemented in March 2014. Along with this, a clinical database for program monitoring and research purposes was established. OBJECTIVE The aim of this study was to estimate the agreement and validity of diagnosis and procedure codes in the Danish Colorectal Cancer Screening Database (DCCSD). METHODS All individuals with a positive immunochemical fecal occult blood test (iFOBT) result who were invited to screening in the first 3 months since program initiation were identified. From these, a sample of 150 individuals was selected using stratified random sampling by age, gender and region of residence. Data from the DCCSD were compared with data from hospital records, which were used as the reference. Agreement, sensitivity, specificity and positive and negative predictive values were estimated for categories of codes "clean colon", "colonoscopy performed", "overall completeness of colonoscopy", "incomplete colonoscopy", "polypectomy", "tumor tissue left behind", "number of polyps", "lost polyps", "risk group of polyps" and "colorectal cancer and polyps/benign tumor". RESULTS Hospital records were available for 136 individuals. Agreement was highest for "colorectal cancer" (97.1%) and lowest for "lost polyps" (88.2%). Sensitivity varied between moderate and high, with 60.0% for "incomplete colonoscopy" and 98.5% for "colonoscopy performed". Specificity was 92.7% or above, except for the categories "colonoscopy performed" and "overall completeness of colonoscopy", where the specificity was low; however, the estimates were imprecise. CONCLUSION A high level of agreement between categories of codes in DCCSD and hospital records indicates that DCCSD reflects the hospital records well. Further, the validity of the categories of codes varied from moderate to high. Thus, the DCCSD may be a valuable data source for future research on colorectal cancer screening.