Objective: To study the completeness and correctness of the Swedish Cancer Registry (SCR) for renal pelvic and ureteral carcinomas diagnosed in western Sweden.
Material and methods: We performed a retrospective clinical and histopathological study of 939 patients in the SCR with a diagnosis of a renal pelvic or ureteral carcinoma between 1971 and 1998 and of 54 patients with a diagnosis of tumors in multiple locations in the urinary tract. In addition, we reviewed our earlier bladder cancer studies to assess whether patients with upper urinary tract tumors had been notified to the SCR.
Results: There were 68 false-positive patients (7.2%) out of 939 in the SCR. The commonest diagnoses were other urological malignancies (n=46) and no malignancy at all (n=15). There were five false-positives (9.3%) out of 54 patients in the file with tumors in multiple locations. Twenty-eight patients with renal pelvic or ureteral carcinoma were identified in our earlier studies but not found in the SCR. Most discrepancies were attributable to inadequate or missing notification by the urologist and registration errors.
Conclusions: The completeness and correctness of the registration of renal pelvic and ureteral carcinomas are unsatisfactory but in line with registries for some other primary sites. The notification of upper urinary tract tumors among patients with a history of bladder cancer was poor, in particular in patients not treated with surgery. Improved communication between reporting sources and the registry is needed. Clinical and histopathological reviews seem necessary in studies based on the SCR.