Reliability of data of the Thames cancer registry on 673 cases of colorectal cancer: effect of the registration process

Abstract

Objective: To measure the reliability of data collected by the Thames cancer registry and to identify factors in the registration process affecting reliability.

Design: A retrospective study of data from the registry, including death certificate only registrations, and hospital case notes on cases of colorectal cancer diagnosed in 1983 or 1988.

Setting: Four districts in South Thames region.

Subjects: 673 cases of colorectal cancer in resident patients.

Main measures: Dates of birth, diagnosis of cancer, and death; sex; tumour site; whether treatment was given; type of treatment; and district of residence.

Results: Among the 416 (62%) case notes retrieved, including 66 death certificate only registrations, full or high agreement between registry data and hospital notes was recorded for sex, district of residence, and dates of birth and death. Only 12% of cases had the same date of diagnosis, which may be due to failure of registry policy. Lower agreement rates occurred for tumour site (87%), whether treatment occurred (84%), and treatments administered (80%, 1983; 72%, 1988). 20% of surgical treatments and 37% of adjuvant therapy, radiotherapy, and chemotherapy were not recorded by the registry. Disagreements were common among death certificate only registrations. Such registrations accounted for 16(32%) disagreements over tumour site, 33(41%) major disagreements over date of diagnosis (difference > 30 days), and 47(44%) disagreements over treatment. In 65 cases the registry failed to capture all treatments carried out within the six month follow up period, 38(58%) of which were for death certificate only registrations. In 36% of death certificate only registrations the patients survived more than one year from diagnosis, indicating a failure of registry policy over retrospective follow up.

Conclusions: Registry data on district of residence; sex; dates of birth, diagnosis, and death are highly reliable, but treatment and tumour site data are less so. Lack of follow up in death certificate only registrations and failure to monitor treatments during follow up period seemed to be associated with disagreements.