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

Abstract

BackgroundCancer 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.MethodsThe 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.ResultsA 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%).ConclusionsThe 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.

Estimating Completeness of Cancer Registration in Iran with Capture-Recapture Methods

“…Based on the results of some studies in Iran, sensitivity of cancer registration was lower or higher in other studies than in this study such as: Ghojazadeh in West Azerbaijan province (38.9%) (Ghojazadeh et al, 2013) and Lankarani in Fars province was above 100% (Lankarani et al, 2013). Although completeness of converge varied by cancer site, improvements in the completeness of converge in some places may have resulted from better communication with reporting centers such as pathology laboratories and lower than that of other countries such as Canada (95.9%) (Robles et al, 1988) and South Korea (93.2%) (Im et al, 2000) .…”

“…Based on the results of eight models that estimated the true number of cancer registry from the three data sources, clinical centers, which were sent directives and guidelines regarding the registry as well as information regarding the obligation to report cancer cases (Lankarani et al, 2013).…”

Quality Assessment of the National Cancer Registry in Iran: Completeness and Validity

“…Cancer registry encompasses regular data collection and analysis of cancer patients and estimation of cancer incidence in different geographical regions (5). With accurate and inclusive data, cancer registry could reduce the burden of this disease (6). In the national registration systems of Iran, the Center of disease control is responsible for the collection and analysis of cancer data.…”

Overview of Cancer Registration Research in the Asian Pacific from 2008-2013

“…n Fars the 5 most frequent cancers in women were breast (13 per 100,000), stomach (4.4 per 100,000), lung and bronchus (2.9 per 100,000), uterus (2.7 per 100,000), and colon and rectum (2.6 per 100,000); and in men, the 5 most frequent types were stomach (9.2 per 100,000), bladder (6.8 per 100,000), lung and bronchus (6.3 per 100,000), lymphocytic leukemia (4.1 per 100,000), and skin melanoma (3.8 per 100,000) (Masoopour et al, 2011)An association has been reported between spatial distribution of common malignancies and soil lead concentration in Isfahan, Iran (Rashidi et al, 2012) Concerning quality of data, sensitivity rate of all cancer cases was 83.9% and that of Population-based Cancer Registry Center was 52%, 93.1% considering both resources, so that using two resources and the capture-recapture method rather than a single resource may be a more reliable method to estimate the number of cancer cases (Ghojazadeh et al, 2013). The cancer registry program in Fars province (southern Iran) was considered satisfactory in terms of completeness of coverage and information about age, but deficient in recording patient personal details and the error level for cancer encoding was unacceptably high, suggesting the need for enhancing hardware and software resources, education and motivation in all public and private sectors involved in the cancer registry program (Lankarani et al, 2013).…”