scholarly journals Imputing pre-diagnosis health behaviour in cancer registry data and investigating its relationship with oesophageal cancer survival time

PLoS ONE ◽  
2021 ◽  
Vol 16 (12) ◽  
pp. e0261416
Author(s):  
Paul P. Fahey ◽  
Andrew Page ◽  
Thomas Astell-Burt ◽  
Glenn Stone
Keyword(s):  
Cancer Registry ◽  
Oesophageal Cancer ◽  
Health Survey ◽  
Health Behaviour ◽  
Survival Data ◽  
Health Behaviours ◽  
Cancer Registries ◽  
Registry Data ◽  
Risk Of Death ◽  
Cancer Registry Data

Background As oesophageal cancer has short survival, it is likely pre-diagnosis health behaviours will have carry-over effects on post-diagnosis survival times. Cancer registry data sets do not usually contain pre-diagnosis health behaviours and so need to be augmented with data from external health surveys. A new algorithm is introduced and tested to augment cancer registries with external data when one-to-one data linkage is not available. Methods The algorithm is to use external health survey data to impute pre-diagnosis health behaviour for cancer patients, estimate misclassification errors in these imputed values and then fit misclassification corrected Cox regression to quantify the association between pre-diagnosis health behaviour and post-diagnosis survival. Data from US cancer registries and a US national health survey are used in testing the algorithm. Results It is demonstrated that the algorithm works effectively on simulated smoking data when there is no age confounding. But age confounding does exist (risk of death increases with age and most health behaviours change with age) and interferes with the performance of the algorithm. The estimate of the hazard ratio (HR) of pre-diagnosis smoking was HR = 1.32 (95% CI 0.82,2.68) with HR = 1.93 (95% CI 1.08,7.07) in the squamous cell sub-group and pre-diagnosis physical activity was protective of survival with HR = 0.25 (95% CI 0.03, 0.81). But the method failed for less common behaviours (such as heavy drinking). Conclusions Further improvements in the I2C2 algorithm will permit enrichment of cancer registry data through imputation of new variables with negligible risk to patient confidentiality, opening new research opportunities in cancer epidemiology.

scholarly journals German oncology certification system for colorectal cancer – relative survival rates of a single certified centre vs. national and international registry data

2021 ◽  
Vol 0 (0) ◽  
Author(s):  
Maximilian Richter ◽  
Lena Sonnow ◽  
Amir Mehdizadeh-Shrifi ◽  
Axel Richter ◽  
Rainer Koch ◽  
...  
Keyword(s):  
Colorectal Cancer ◽  
Rectal Cancer ◽  
International Comparison ◽  
Cancer Registry ◽  
Survival Data ◽  
Survival Rates ◽  
Relative Survival ◽  
Registry Data ◽  
Cancer Registry Data ◽  
Colon And Rectal Cancer

Abstract Objectives To evaluate how the certification of specialised Oncology Centres in Germany affects the relative survival of patients with colorectal cancer (CRC) by means of national and international comparison. Methods Between 2007 and 2013, 675 patients with colorectal cancer, treated at the Hildesheim Hospital, an academic teaching hospital of the Hannover Medical School (MHH), were included. A follow-up of the entire patient group was performed until 2014. To obtain international data, a SEER-database search was done. The relative survival of 148,957 patients was compared to our data after 12, 36 and 60 months. For national survival data, we compared our rates with 41,988 patients of the Munich Cancer Registry (MCR). Results Relative survival at our institution tends to be higher in advanced tumour stages compared to national and international cancer registry data. Nationally we found only little variation in survival rates for low stages CRC (UICC I and II), colon, and rectal cancer. There were notable variations regarding relative survival rates for advanced CRC tumour stages (UICC IV). These variations were even more distinct for rectal cancer after 12, 36 and 60 months (Hildesheim Hospital: 89.9, 40.3, 30.1%; Munich Cancer Registry (MCR): 65.4, 28.7, 16.6%). The international comparison of CRC showed significantly higher relative survival rates for patients with advanced tumour stages after 12 months at our institution (77 vs. 54.9% for UICC IV; raw p<0.001). Conclusions Our findings suggest that patients with advanced tumour stages of CRC and especially rectal cancer benefit most from a multidisciplinary and guidelines-oriented treatment at Certified Oncology Centres. For a better evaluation of cancer treatment and improved national and international comparison, the creation of a centralised national cancer registry is necessary.

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.

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.

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 Cancer Registry Survival Data for Metrics of Continuous Quality Improvement and Quality Assurance

2020 ◽  
pp. 1-10
Author(s):  
Robert O. Dillman ◽  
Robert O. Dillman ◽  
Stephanie E. McClure
Keyword(s):  
Quality Assurance ◽  
Quality Improvement ◽  
Cancer Registry ◽  
Continuous Quality Improvement ◽  
Survival Data ◽  
Specific Treatment ◽  
Cancer Registries ◽  
Registry Data ◽  
Lead Author ◽  
Continuous Quality

Purpose: The purpose of this article is to illustrate how cancer registry data can be used to address questions of quality assurance and continuous quality improvement, and to generate contemporary cohorts of patients for retrospective studies. The history and purpose of hospital cancer registries is reviewed and examples of use of registry data provided. Methods: Cancer Registry information, manuals, and definitions were reviewed. The 25-year experience of the lead author in collaborating with registrars and using the cancer registry of a large community hospital in southern California is described. The strengths and weaknesses of such data are discussed. Examples of completed studies are provided to illustrate how such data was organized, analyzed, and presented to physicians and administrators, and for peer reviewed publications. Results: The strengths of such data are the large numbers of patients, validity of date of diagnosis, histologic diagnosis, general stage, and date of death. The major limitations of the data are due to incomplete reporting of specific treatment regimens, especially after the initial 4-month period of management. The quality assurance and quality improvement studies generated proved to be of great interest to local physicians and administrators. Several such studies were used in peer-reviewed publications. The interest and job satisfaction of registrars, and data quality all improved when registry data was being used and reported locally rather than merely being submitted to a national data repository. Conclusion: In the absence of comprehensive integrated medical care data bases, high-quality cancer registries can be used to address local issues related to quality improvement and quality assurance and provide data for peer-reviewed publications.

scholarly journals Improving the usability and utilization of cancer registry data : the need to identify a core data set

2012 ◽  
Author(s):  
◽  
Iris Zachary
Keyword(s):  
Public Health ◽  
Data Collection ◽  
Cancer Registry ◽  
Data Use ◽  
Cancer Registries ◽  
Cancer Surveillance ◽  
Registry Data ◽  
Data Standards ◽  
Cancer Data ◽  
Cancer Registry Data

Cancer registries in the US and Canada have a long history of data standards and data collection that have developed from a minimal dataset to the standard dataset that is used now. Central Cancer Registries (CCRs) are good resources for cancer data, but are often underutilized. CCRs are recognized for high quality data standards by the Centers for Disease Control and Prevention (CDC) National Program of Cancer Registries (NPCR) or the National Cancer Institute (NCI) Surveillance, Epidemiology, and End Results (SEER) Program and receive certification from the North American Association of Central Registries (NAACCR). Each year, there are many changes to the data that are collected in the cancer registry field. Standards, requirements, and medical knowledge change frequently. The changes in the data collection process cause interference and decrease in quality of data fields, but also delays in the timely collection of cancer registry data. The objective of this study is to identify what essentially needs to be collected and what can be collected optionally in a cancer registry. The goal is a robust dataset that can be used for other disease registries, cancer data surveillance, public health, and research. CCRs and Cancer Centers (CR) were surveyed to identify and describe the data items that are collected and needed to achieve a dataset that can serve cancer surveillance and research. The surveys were analyzed to identify overlaps of common and special interests, as well as barriers. The results showed that cancer registries have data available, but need to look at the timely release of a core dataset for use in cancer surveillance and research. The surveys also evaluated the barriers to data use from cancer registries and barriers for data use of collected datasets to identify the initial data request process. Data in the cancer registry are in a format that can easily be adopted by public health, surveillance, and research. The requesting process needs to be accessible, understandable, and streamlined to enable successful use of the data.

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