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

Abstract

Introduction: Cancer Registry is one of the important components of health information systems in developing countries. Continuous monitoring of data quality can have a crucial role in controlling cancers. This study aimed to assess the quality of cancer registry data in terms of completeness of coverage and validity. Methods: Data were collected from three main sources, including Pathology registry, Hospital and national death registries in five provinces in Iran during March 2008-March 2011. We used two source capture-recapture method for estimate of cancer registry coverage and measures of validity were percentage of death certificate only (DCO%), histological verified cases (MV%); cancer incidence in childhood based on sex and age group, percentage of cancer in the elderly (80 years or above) and mortality-to-incidence ratio (M:I).We compared them to international standards. Results: The overall completeness was estimated at 54.2% and 32.4% under reporting for stomach cancer in a period of three years (2008 -2010). MV% and percentage of unknown primary site of the tumor were 68.7%, and 5% respectively. The mortality-to-incidence ratio for men and women was 37.6% and 28.2%, and percentage of cancer in the elderly was 10.9% in 2010 year. The age-specific rate in girls and boys in age groups of 5 -9 and 10 -14 years was lower than minimum of the recommended international standards. Conclusions:The results of this study showed data quality of cancer registry is relatively low in terms of the completeness and validity. Cancer registries should pay great attention to the quality of their data. In addition to technical measures in data processing, continuous evaluation of their quality in order to achieve the set goals is essential.

<p>A Conceptual Model of an Oncology Information System</p>

“…In order to collect data, the Delphi Method was used in two rounds. The research instrument was a five-point Likert scale questionnaire, which was designed based on the literature review [5][6][7][8][9][10][11][12][13][14][15] and the results of a previous qualitative study. 16 In the first round of the Delphi study, the questionnaire consisted of three main sections including a) participants' characteristics (five items), b) data elements required for cancer screening (18 items), prevention (16 items), diagnosis (19 items), treatment (40 items), mental care and pain relief (eight items), and end-of-life cancer care (five items), and c) functional requirements of an oncology information system (22 items).…”

“…14 Currently, hospital information systems and paperbased records both are used to collect cancer data in Iran. However, different issues, such as data incompleteness, difficulty in getting access to the required data and challenges in sharing data between different departments 15 have hindered effective use of cancer data. As a result, it seems that identifying users' requirements and designing models and diagrams of an oncology information system can be a starting point to design this system in the near future to improve cancer care documentation.…”

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 …”

“…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).…”

Oncology Information System: A Qualitative Study of Users’ Requirements

“…Although a national cancer registry programme has been implemented, it does not cover all cases (Zendehdel et al, 2010), and there are a number of problems with incomplete data, getting access to data, the lack of system integration and information sharing between care givers. (Mohammadi et al, 2016) Therefore, it seems that developing an oncology information system can help to improve the accessibility of information and can lead to better use of cancer-related data. As user involvement is a necessary component of designing a successful system, the aim of this study was to identify users' requirements of an oncology information system.…”