scholarly journals Quality of Cancer Registry Data: Botswana Experience, Demonstrating Improvements Over Time

2016 ◽  
Vol 2 (3_suppl) ◽  
pp. 43s-43s
Author(s):  
Malebogo Pusoentsi ◽  
Bame P. Shatera ◽  
Setlogelo Motlogi ◽  
Tuduetso Monagen ◽  
Neo Tapela ◽  
...  
Keyword(s):  
Data Quality ◽  
Cancer Registry ◽  
Death Certificate ◽  
Kaposi Sarcoma ◽  
Cancer Registries ◽  
Health Systems Strengthening ◽  
Registry Data ◽  
Cancer Registry Data ◽  
Over Time

Abstract 69 Background: One of the challenges to addressing the growing burden of cancer in low- and middle-income countries is insufficient data and limitations in quality of cancer registries. The Botswana National Cancer Registry (BNCR), first established in 1999, is an IARC-endorsed population-based registry covering a population of 2.1 million. Here we assess BNCR's data quality over time. Methods: We conducted a retrospective review of BNCR data that was collected between January 1, 2005 and December 31, 2010. We assessed basis of cancer diagnosis, as well as key data quality indices (completeness, consistency, uniqueness, and accuracy) over two time periods: 2005–2007 and 2008–2010. We assessed cancer incidence and distribution during this time period, and reviewed Botswana Ministry of Health operational documents to identify major health care initiatives that may have had a bearing on cancer registry data quality. Results: In total, 8,938 cancer cases were registered 2005-2010. Kaposi sarcoma was the most commonly diagnosed cancer (n=1766, 19.4%), followed by cervical cancer (n=1252, 13.8%) and then breast cancer (n=801, 8.8%). During 2005-2007, 79% of all cancers were morphologically verified and 6% of were verified by death certificate alone. By 2008-2010, 89% of cancers were morphologically verified while none (0%) were verified by death certificate alone. There was a marked difference for basis of Kaposi sarcoma diagnosis (26% in 2005-2007, 43.8% 2008-2010), which changed from mainly clinical to pathology-based diagnosis. Factors that have contributed to this improvement include targeted initiatives such as clinician training, as well as broader health system developments such as general laboratory diagnostic capacitation that has facilitated use of histopathology services for cancer. Conclusion: BNCR data quality has improved over the years. These improvements enhance utility of cancer registry data for healthcare planning, and highlight the merit of cross-cutting health systems strengthening developments. This assessment, and the initiatives that have contributed to BNCR data improvement may be relevant to cancer registries in similar settings. AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST: No COIs from the authors.

scholarly journals Data Reliability and Coding Completeness of Cancer Registry Information Using Reabstracting Method in the National Cancer Institute: Thailand, 2012 to 2014

2018 ◽  
pp. 1-9 ◽  
Author(s):  
Anupong Sirirungreung ◽  
Rangsiya Buasom ◽  
Chuleeporn Jiraphongsa ◽  
Suleeporn Sangrajrang
Keyword(s):  
Breast Cancer ◽  
Data Quality ◽  
Cancer Registry ◽  
National Cancer Institute ◽  
Medical Records ◽  
Cancer Registries ◽  
Data Reliability ◽  
Agreement Rate ◽  
Cancer Registry Data

Purpose Data quality is a core value of cancer registries, which bring about greater understanding of cancer distribution and determinants. Thailand established its cancer registry in 1986; however, studies focusing on data reliability have been limited. This study aimed to assess the coding completeness and reliability of the National Cancer Institute (NCI) hospital-based cancer registry, Thailand. Methods This study was conducted using the reabstracting method. We focused on seven cancer sites—the colon, rectum, liver, lung, breast, cervix, and prostate—registered between 2012 and 2014 in the NCI hospital-based cancer registry. Missing data were identified for coding completeness calculation among important variables. The agreement rate and κ coefficient were computed to represent data reliability. Results For reabstracting, we retrieved 957 medical records from a total of 5,462. These were selected using the probability proportional to size method, stratified by topology, sex, and registered year. The overall coding completeness of the registered and reabstracted data was 89.9% and 93.6%, respectively. In addition, the overall agreement rate among variables ranged from 84.7% to 99.6%, and κ coefficient ranged from 0.619 to 0.995. The misclassification among unilateral organs caused lower coding completeness and agreement rate of laterality coding. The completeness of current residency could be improved using the reabstracting method. The lowest agreement rate was found among various categories of diagnosis basis. Sex misclassification for male breast cancer was identified. Conclusion The coding completeness and data reliability of the NCI hospital-based cancer registry met the standard in most critical variables. However, some challenges remain to improve the data quality. The reabstracting method could identify the critical points affecting the quality of cancer registry data.

scholarly journals Validity of Cancer Registry Data for Measuring the Quality of Breast Cancer Care

2002 ◽  
Vol 94 (11) ◽  
pp. 835-844 ◽  
Author(s):  
J. L. Malin ◽  
K. L. Kahn ◽  
J. Adams ◽  
L. Kwan ◽  
M. Laouri ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Cancer Registry ◽  
Cancer Care ◽  
Registry Data ◽  
Breast Cancer Care ◽  
Cancer Registry Data

Utilization of cancer registry data for monitoring quality of care

2011 ◽  
Vol 201 (5) ◽  
pp. 645-649 ◽  
Author(s):  
J. David Beatty ◽  
Mariko Adachi ◽  
Candy Bonham ◽  
Mary Atwood ◽  
Mary S. Potts ◽  
...  
Keyword(s):  
Quality Of Care ◽  
Cancer Registry ◽  
Registry Data ◽  
Cancer Registry Data ◽  
Monitoring Quality

scholarly journals Web-based interactive mapping from data dictionaries to ontologies, with an application to cancer registry

2020 ◽  
Vol 20 (S10) ◽  
Author(s):  
Shiqiang Tao ◽  
Ningzhou Zeng ◽  
Isaac Hands ◽  
Joseph Hurt-Mueller ◽  
Eric B. Durbin ◽  
...  
Keyword(s):  
Cancer Registry ◽  
Data Entry ◽  
Cancer Registries ◽  
The State ◽  
Registry Data ◽  
Data Dictionary ◽  
Web Based ◽  
Cancer Registry Data ◽  
Interactive Mapping ◽  
Data Elements

Abstract Background The Kentucky Cancer Registry (KCR) is a central cancer registry for the state of Kentucky that receives data about incident cancer cases from all healthcare facilities in the state within 6 months of diagnosis. Similar to all other U.S. and Canadian cancer registries, KCR uses a data dictionary provided by the North American Association of Central Cancer Registries (NAACCR) for standardized data entry. The NAACCR data dictionary is not an ontological system. Mapping between the NAACCR data dictionary and the National Cancer Institute (NCI) Thesaurus (NCIt) will facilitate the enrichment, dissemination and utilization of cancer registry data. We introduce a web-based system, called Interactive Mapping Interface (IMI), for creating mappings from data dictionaries to ontologies, in particular from NAACCR to NCIt. Method IMI has been designed as a general approach with three components: (1) ontology library; (2) mapping interface; and (3) recommendation engine. The ontology library provides a list of ontologies as targets for building mappings. The mapping interface consists of six modules: project management, mapping dashboard, access control, logs and comments, hierarchical visualization, and result review and export. The built-in recommendation engine automatically identifies a list of candidate concepts to facilitate the mapping process. Results We report the architecture design and interface features of IMI. To validate our approach, we implemented an IMI prototype and pilot-tested features using the IMI interface to map a sample set of NAACCR data elements to NCIt concepts. 47 out of 301 NAACCR data elements have been mapped to NCIt concepts. Five branches of hierarchical tree have been identified from these mapped concepts for visual inspection. Conclusions IMI provides an interactive, web-based interface for building mappings from data dictionaries to ontologies. Although our pilot-testing scope is limited, our results demonstrate feasibility using IMI for semantic enrichment of cancer registry data by mapping NAACCR data elements to NCIt concepts.

CLL/SLL Is More Common Than Registry Incidence Suggests: A Population-Based Study in Manitoba, Canada.

Blood ◽  
2005 ◽  
Vol 106 (11) ◽  
pp. 1334-1334 ◽  
Author(s):  
Matthew D. Seftel ◽  
Donna Hewitt ◽  
Hui Zhang ◽  
Donna Turner ◽  
Spencer Gibson ◽  
...  
Keyword(s):  
Flow Cytometry ◽  
Cancer Registry ◽  
Census Data ◽  
Tertiary Care ◽  
Cancer Registries ◽  
Population Based ◽  
Lymphocytic Leukemia ◽  
Registry Data ◽  
Population Based Study ◽  
Cancer Registry Data

Abstract Background: The exact incidence of chronic lymphocytic leukemia (CLL) and small lymphocytic lymphoma (SLL) is unknown. In the appropriate clinical setting, peripheral blood immunophenotyping is often sufficient for diagnosis. Cancer registries that rely only on histological or cytological reporting may inaccurately estimate the incidence of CLL/SLL. The province of Manitoba, with a population of 1.2 million people, has a centralized flow cytometry service as well as a provincial cancer registry. We thus had the opportunity to use these large databases to describe the demographic and clinical patterns of CLL/SLL. This has enabled us to test the hypothesis that registry data underestimates the incidence of this disease. Methods: All patients diagnosed with CLL/SLL between January 1, 1998 and December 31, 2003 were obtained from the Manitoba cancer registry and the central flow cytometry database. Additional clinical characteristics were obtained from a chart review. Results: 491 patients were diagnosed by flow cytometry. In contrast, cancer registry data reported 345 patients with CLL/SLL, 131 (38%) of which were diagnosed in tertiary care centres. Thus, 146 (30%) patients were not known to the provincial cancer registry. Median age of pts was 71 years (range, 24–97). Based on 2001 Canadian census data, the crude incidence of CLL/SLL in Manitoba is estimated to be 7 per 100 000 persons. Other demographic and clinical data of this population-based study will be presented. Conclusion: By incorporating diagnostic immunophenotyping, the incidence of CLL/SLL appears to be higher than that reported by a large Canadian cancer registry. This observation may apply to other local and national jurisdictions, and should be studied further.

Use of State Cancer Surveillance Data to Estimate the Cancer Burden in Disaster Affected Areas–Hurricane Katrina, 2005

2007 ◽  
Vol 22 (4) ◽  
pp. 282-290 ◽  
Author(s):  
Djenaba A. Joseph ◽  
Phyllis A. Wingo ◽  
Jessica B. King ◽  
Lori A. Pollack ◽  
Lisa C. Richardson ◽  
...  
Keyword(s):  
Hurricane Katrina ◽  
Cancer Patients ◽  
Cancer Registry ◽  
Cancer Registries ◽  
Incidence Rates ◽  
Cancer Surveillance ◽  
Registry Data ◽  
Specific Calculation ◽  
Cancer Burden ◽  
Cancer Registry Data

AbstractPurpose:The objective of this study was to estimate the burden of cancer in counties affected by Hurricane Katrina using population-based cancer registry data, and to discuss issues related to cancer patients who have been displaced by disasters.Methods:The cancer burden was assessed in 75 counties in Louisiana, Alabama, and Mississippi that were designated by the Federal Emergency Management Agency as eligible for individual and public assistance. Data from the National Program of Cancer Registries were used to determine three-year average annual age-adjusted incidence rates and case counts during the diagnosis years 2000–2002 for Louisiana and Alabama. Expected rates and counts for the most-affected counties in Mississippi were estimated by direct, age-specific calculation using the 2000–2002 county level populations and the site-, sex-, race-, and age-specific cancer incidence rates for Louisiana.Results:An estimated 23,549 persons with a new diagnosis of cancer in the past year resided in the disaster-affected counties. Fifty-eight percent of the cases were cancers of the lung/bronchus, colon/rectum, female breast, and prostate. Eleven of the top 15 cancer sites by sex and black/white race in disaster counties had >50% of cases diagnosed at the regional or distant stage.Conclusions:Sizable populations of persons with a recent cancer diagnosis were potentially displaced by Hurricane Katrina. Cancer patients required special attention to access records in order to confirm diagnosisand staging, minimize disruption in treatment, and ensure coverage of care. Cancer registry data can be used to provide disaster planners and clinicians with estimates of the number of cancer patients, many of whom maybe undergoing active treatment.

Ascertainment and evaluation of interval cancers in population-based mammography screening programmes: a collaborative study in four European centres

2005 ◽  
Vol 12 (1) ◽  
pp. 43-49 ◽  
Author(s):  
Sven Törnberg ◽  
Mary Codd ◽  
Vitor Rodrigues ◽  
Nereo Segnan ◽  
Antonio Ponti
Keyword(s):  
Health Care ◽  
Cancer Registry ◽  
Mammography Screening ◽  
Breast Cancer Incidence ◽  
Collaborative Study ◽  
Interval Cancer ◽  
Cancer Registries ◽  
Population Based ◽  
Registry Data ◽  
Cancer Registry Data

Objectives: The purpose of the present study was to estimate the interval cancer (IC) rates in four population-based mammography screening programmes in four countries with different health-care environments, different access to cancer registry data, and different age groupsof women invited. Setting: The screening programmes in Coimbra (Portugal), Dublin (Ireland), Stockholm (Sweden), and Turin (Italy) participated in the study. Methods: All cancer cases were searched for in cancer registries. IC rates and other outcome measures from the screeningprogrammes were estimated and compared between the centres. Poisson regression model was used to estimate the proportional incidence based on IC rate in relation to expected total breast cancer incidence rate in the absence of screening. Results: There was a more than tenfold difference inthe number of invited women at the first round between the involved centres. The IC rates varied between 4.3 and 23.8 per 10,000 women screened. The levels of IC rates in relation to the estimated background incidence varied from 0.35 up to 0.46 depending on age groups involved in the programme,but did not differ significantly between three of the four involved centres. Conclusions: IC rates were quite similar between three of the four centres despite the differences in target population, invited ages, length of building-up of the programmes and different health-care organizations.Different access to complete cancer registry data is likely to explain the lower IC rates in the fourth centre.

scholarly journals Epidemiology of Female Breast Cancer in West Jakarta, Indonesia

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 65s-65s
Author(s):  
J. Agustina ◽  
D. Sinulingga ◽  
E. Suzanna ◽  
B. Andinata ◽  
R. Ramadhan ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Cancer Registry ◽  
Population Based ◽  
Female Breast Cancer ◽  
Registry Data ◽  
Quality Data ◽  
Cancer Center ◽  
Cancer Registry Data ◽  
Female Breast

Background: Breast cancer was the most common cancer in the world. GLOBOCAN 2012 estimated the incidence of female breast cancer in Indonesia was 40.3 per 100,000 and the mortality rate was 16.6 per 100,000. In 2016, Dharmais National Cancer Center was appointed as Regional Population Based Cancer Registry in West Jakarta. West Jakarta was a municipality with 2,281,945 populations, being the 2nd largest population in DKI Jakarta Province. Aim: This study was to evaluate the quality of population based cancer registry data and to describe the epidemiology of female breast cancer in West Jakarta, Indonesia during 2008-2012 and to compare with GLOBOCAN 2012 . Methods: We used population based cancer registry data with ICD - O code C50.0-C50.9 in female who live in West Jakarta. The population based cancer registry data were collected in Dharmais National Cancer Center. We evaluated the quality of population based cancer registry data based on WHO-IARC rules for cancer registry data. Results: The quality of population based cancer registry data were microscopic verification (70%); DCO percentage (20.8%), and unknown age (0%). The trend of female breast cancer was increasing during 2008-2012. Age-standardized rate incidence was 19.3 per 100,000. The most of frequent were in 45-49 years old, not other specific location subtopography (81.5%), the histopathology type was ductal and lobular neoplasm (51.8%), in stage III (44%), and with metastases to bone (34%). The average of length of duration was 29.1 months, most of them were unknown of last status contact (84%). Conclusion: The coverage and quality data of West Jakarta population based cancer registry need to be increased and establish a follow-up system to decrease the unknown last contact status of patients.

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