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

Abstract

Completeness is an important indicator of data quality in cancer registry programs. This study aimed to estimate the completeness of registered cases in a population based cancer registry program implemented in five provinces of Iran. Capture-recapture methods were used to esti mate the number of cases that may have been missed and to estimate rates of completeness for different categories of age, year, and sex. The data used for this study were obtained from three sources: 1) National Pathology Database; 2) National Hospital Discharge Database; and 3) National Death Registry Database. The three sources were linked and duplicates were identified based on first name, last name, father's names, and date of birth, ICD code, and case's residency address using Microsoft Excel. Removing duplicates, the three sources reported a total of 35,643 cases from March 2008 to March 2011. Running many different multivariate models of capture-recapture and controlling for source dependencies revealed an overall under-reporting of 49% in all five registries combined. The estimated completeness differed based on age, sex, and year. The overall completeness was higher for males than females (71.2% for males and 59.9% for females). Younger age had lower rates of completeness compared to older age (38.1% for <40 years, 55.4% for 40-60 years, and 76.7 for >60 years). The results of this study indicated a moderate to severe (depending on the age, sex and year) degree of completeness in the population based cancer registration of Iran.

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

“…This finding is consistent with the results of the studies conducted in Iran and Japan in this regard (23,24).…”

Descriptive Epidemiology of Brain and Central Nervous System Tumours: Results from Iran National Cancer Registry, 2010-2014

“…Hasanpour-Heidari et al reported completeness of 96.3% for CNS tumours in Golestan province, which was the best rate among other groups of tumours. Mohammadi et al reported INCR completeness of 71.2% and 59.9% for men and women, respectively, regarding all types of registered tumours [ 32 , 33 ].…”

Incidence patterns of gynecological sarcomas in Iran analysis of National Cancer Registry data between 2009 and 2014

“…In this population‐based retrospective study, the data on cancer patients diagnosed with a sarcoma morphology arising in the female genital organs diagnosed between 2009 and 2014 were extracted from the Iran National Cancer Registry (INCR) dataset, 8 which is based on pathological report, hospital report, death certificate and clinical report during main diagnosis and management visit and follow‐up in each province throughout the country 9–11 …”

“…It should be noted that the included subjects were those who met the morphologic criteria for soft tissue sarcoma (STS) based on the classifications proposed by the International Agency for Research on Cancer (IARC‐2013) 12 . The validity and completeness of these data were assessed and qualified in our center previously 9,10 and applied here too, otherwise quality control assessment was performed by matching tumor with gender, location of tumor with age, tumor topography with morphology, age with date of diagnosis and age with date of birth. Duplicated cases were assessed based on patients' first name, family name, gender and national ID number.…”

“…In this population-based retrospective study, the data on cancer patients diagnosed with a sarcoma morphology arising in the female genital organs diagnosed between 2009 and 2014 were extracted from the Iran National Cancer Registry (INCR) dataset, 8 which is based on pathological report, hospital report, death certificate and clinical report during main diagnosis and management visit and follow-up in each province throughout the country. [9][10][11] The provided information included patients' name, family name, age, gender, date of birth, province of residence and date of diagnosis, as well as the primary site, morphology and grade of the tumor. It should be noted that the included subjects were those who met the morphologic criteria for soft tissue sarcoma (STS) based on the classifications proposed by the International Agency for Research on Cancer (IARC-2013).…”