Registering multiple primary tumors in central cancer registries.
Howe-HL; Weinstein-R; Schult-T; Kohler-B; Hotes-J
J Registry Manag 2003 Nov; 30(4):113-116
Coding rules for multiple primary tumors are complex and may diminish data reliability. The purpose of this study was to assess the reliability and utility of reports of multiple primary cancers among breast cancer cases. A NAACCR dataset for tumors diagnosed from 1994 - 1998 was used. Within each registry, all tumors were linked by patient identification number to determine the history of primary tumors for individuals. Once linked, patients with one breast cancer and another primary tumor were extracted. For these cases, data recorded for sex, race, ethnicity, and sequence number were compared among the multiple primary tumor reports. A full 10% of the sample was lost by the omission of 2 registries with pervasive errors in sequence number assignment, resulting in 327,537 records of invasive breast cancers. Of the 62,394 multiple primary patients, 24,273 had multiple primaries diagnosed during the 5 year interval. Of these, 32 tumors had an unknown sequence number; 1,953 patients had the first tumor incorrectly coded as a single primary; and 158 records were sequenced incorrectly. Inconsistencies were also found in race, ethnicity, and sex identification, but these were few. It was concluded that some data quality problems existed, however, routine quality assurance registry operations produced a reasonably accurate and useful patient-linked file.
Analytical-processes; Breast-cancer; Cancer-rates; Epidemiology; Standards; Statistical-analysis; Statistical-quality-control; Tumors;
Author Keywords: breast neoplasms; epidemiology; multiple primary tumors
Holly L. Howe, PhD, Executive Director, 2121 W White Oaks Dr, Suite C, Springfield, IL 62704
Journal of Registry Management
University of Minnesota Twin Cities