Data coverage of a cancer registry in southern Iran before and after implementation of a population-based reporting system: a 10-year trend study

BACKGROUND: Cancer registries help to decrease the burden of cancers by collecting accurate and complete data. We aimed to measure the completeness of coverage of information recorded between 2000 and 2009 in a cancer registry program in Fars province, southern Iran. METHODS: The cancer registry program run by Shiraz University of Medical Sciences was investigated in two periods: pathology-based data from 2000 to 2007 and population-based data from 2007 to 2009. Completeness of yearly coverage was measured as the number of reported cases of cancer in each year divided by estimated cases based on 107.3 new cases per 100 000 individuals. The percentage of complete data registration (patient’s name, age, gender, address, phone number and father’s name) and correct cancer encoding was calculated for each year and compared to the maximum acceptable error rate for each item. RESULTS: A total of 29 277 non-duplicate cancer records were studied. Completeness of coverage varied from 22.68% in 2000 to 118.7% in 2008. Deficiencies in patients’ demographic data were highest for name in 2002 (0.09%), age in 2006 (2.36%), gender in 2001 (0.06%) and father’s name in 2001 (52.5%). Incomplete address (99.7%) and missing phone number (100%) were most frequent in 2000, and deficiencies in encoding information were highest in 2008 (6.36%). CONCLUSIONS: The cancer registry program in Fars province (southern Iran) was considered satisfactory in terms of completeness of coverage and information about age. However, it was deficient in recording patients’ phone number and address, and father’s name. The error level for cancer encoding was unacceptably high. Enhancing hardware and software resources, education and motivation in all public and private sectors involved in the cancer registry program, and greater attention to epidemiological research are needed to increase the quality of the cancer registry program, including its completeness.