Evaluation of data quality in the cancer registry: Principles and methods Part II. Completeness.
TL;DR: This second instalment of a two-part review of data quality methods at the cancer registry focuses on the principles and techniques available for estimating completeness, separating methods into those that are semi-quantitative -- in that they give an indication of the degree of completeness relative to other registries or over time, and more quantitative techniques -- those that provide a numerical evaluation.
About: This article is published in European Journal of Cancer.The article was published on 2009-03-01. It has received 417 citations till now. The article focuses on the topics: Cancer registry & Population.
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TL;DR: Many of the estimated cancer cases and deaths can be prevented through reducing the prevalence of risk factors, while increasing the effectiveness of clinical care delivery, particularly for those living in rural areas and in disadvantaged populations.
Abstract: With increasing incidence and mortality, cancer is the leading cause of death in China and is a major public health problem. Because of China's massive population (1.37 billion), previous national incidence and mortality estimates have been limited to small samples of the population using data from the 1990s or based on a specific year. With high-quality data from an additional number of population-based registries now available through the National Central Cancer Registry of China, the authors analyzed data from 72 local, population-based cancer registries (2009-2011), representing 6.5% of the population, to estimate the number of new cases and cancer deaths for 2015. Data from 22 registries were used for trend analyses (2000-2011). The results indicated that an estimated 4292,000 new cancer cases and 2814,000 cancer deaths would occur in China in 2015, with lung cancer being the most common incident cancer and the leading cause of cancer death. Stomach, esophageal, and liver cancers were also commonly diagnosed and were identified as leading causes of cancer death. Residents of rural areas had significantly higher age-standardized (Segi population) incidence and mortality rates for all cancers combined than urban residents (213.6 per 100,000 vs 191.5 per 100,000 for incidence; 149.0 per 100,000 vs 109.5 per 100,000 for mortality, respectively). For all cancers combined, the incidence rates were stable during 2000 through 2011 for males (+0.2% per year; P = .1), whereas they increased significantly (+2.2% per year; P < .05) among females. In contrast, the mortality rates since 2006 have decreased significantly for both males (-1.4% per year; P < .05) and females (-1.1% per year; P < .05). Many of the estimated cancer cases and deaths can be prevented through reducing the prevalence of risk factors, while increasing the effectiveness of clinical care delivery, particularly for those living in rural areas and in disadvantaged populations.
13,073 citations
Institute for Health Metrics and Evaluation1, University of Washington2, Iran University of Medical Sciences3, King's College London4, Arabian Gulf University5, University of North Texas6, Auckland University of Technology7, Alaska Native Tribal Health Consortium8, Columbia University9, Wuhan University10, Imperial College London11, University of Alabama at Birmingham12, University at Albany, SUNY13, City University of New York14, University of California, San Francisco15, Griffith University16, Environment Agency17, New York University18, Southern University College19, Emory University20, University of Ottawa21, Kosin University22, University of Toronto23, University of British Columbia24, United Arab Emirates University25, Albert Einstein College of Medicine26, University of São Paulo27, Nova Southeastern University28, University of Sydney29, Heidelberg University30, Case Western Reserve University31, Cancer Treatment Centers of America32, University of Oxford33, George Mason University34, James Cook University35, University of Trieste36, University of Calgary37, Wageningen University and Research Centre38, University of Gothenburg39, University of the Witwatersrand40, Harvard University41, Jackson State University42, University of Arizona43, University of Hong Kong44, Tehran University of Medical Sciences45, University of Western Australia46, Aintree University Hospitals NHS Foundation Trust47, Veterans Health Administration48, University of Colorado Denver49, Royal Children's Hospital50, University of Melbourne51, Australian National University52, University of Marburg53, Charité54, Health Canada55, College of Health Sciences, Bahrain56, Karolinska Institutet57, Northumbria University58, University of Edinburgh59, National Research University – Higher School of Economics60, Queen Mary University of London61, Addis Ababa University62, Northwestern University63, Northeastern University64, Mario Negri Institute for Pharmacological Research65, Arak University of Medical Sciences66, University of Nottingham67, University of Tokyo68, Public Health Foundation of India69, University of Groningen70, University of the Philippines Manila71, University of Bologna72, Kyung Hee University73, Brighton and Sussex Medical School74, University of Bergen75, Stavanger University Hospital76, University of Queensland77, National Centre for Disease Control78, University of Sheffield79, Universidad Autónoma Metropolitana80, University College London81, Genentech82, Universiti Tunku Abdul Rahman83, Norwegian Institute of Public Health84
TL;DR: To estimate mortality, incidence, years lived with disability, years of life lost, and disability-adjusted life-years for 28 cancers in 188 countries by sex from 1990 to 2013, the general methodology of the Global Burden of Disease 2013 study was used.
Abstract: Importance Cancer is among the leading causes of death worldwide. Current estimates of cancer burden in individual countries and regions are necessary to inform local cancer control strategies. Objective To estimate mortality, incidence, years lived with disability (YLDs), years of life lost (YLLs), and disability-adjusted life-years (DALYs) for 28 cancers in 188 countries by sex from 1990 to 2013. Evidence Review The general methodology of the Global Burden of Disease (GBD) 2013 study was used. Cancer registries were the source for cancer incidence data as well as mortality incidence (MI) ratios. Sources for cause of death data include vital registration system data, verbal autopsy studies, and other sources. The MI ratios were used to transform incidence data to mortality estimates and cause of death estimates to incidence estimates. Cancer prevalence was estimated using MI ratios as surrogates for survival data; YLDs were calculated by multiplying prevalence estimates with disability weights, which were derived from population-based surveys; YLLs were computed by multiplying the number of estimated cancer deaths at each age with a reference life expectancy; and DALYs were calculated as the sum of YLDs and YLLs. Findings In 2013 there were 14.9 million incident cancer cases, 8.2 million deaths, and 196.3 million DALYs. Prostate cancer was the leading cause for cancer incidence (1.4 million) for men and breast cancer for women (1.8 million). Tracheal, bronchus, and lung (TBL) cancer was the leading cause for cancer death in men and women, with 1.6 million deaths. For men, TBL cancer was the leading cause of DALYs (24.9 million). For women, breast cancer was the leading cause of DALYs (13.1 million). Age-standardized incidence rates (ASIRs) per 100 000 and age-standardized death rates (ASDRs) per 100 000 for both sexes in 2013 were higher in developing vs developed countries for stomach cancer (ASIR, 17 vs 14; ASDR, 15 vs 11), liver cancer (ASIR, 15 vs 7; ASDR, 16 vs 7), esophageal cancer (ASIR, 9 vs 4; ASDR, 9 vs 4), cervical cancer (ASIR, 8 vs 5; ASDR, 4 vs 2), lip and oral cavity cancer (ASIR, 7 vs 6; ASDR, 2 vs 2), and nasopharyngeal cancer (ASIR, 1.5 vs 0.4; ASDR, 1.2 vs 0.3). Between 1990 and 2013, ASIRs for all cancers combined (except nonmelanoma skin cancer and Kaposi sarcoma) increased by more than 10% in 113 countries and decreased by more than 10% in 12 of 188 countries. Conclusions and Relevance Cancer poses a major threat to public health worldwide, and incidence rates have increased in most countries since 1990. The trend is a particular threat to developing nations with health systems that are ill-equipped to deal with complex and expensive cancer treatments. The annual update on the Global Burden of Cancer will provide all stakeholders with timely estimates to guide policy efforts in cancer prevention, screening, treatment, and palliation.
2,375 citations
TL;DR: The statistical models used used to estimate incidence and mortality data for 25 cancers in 40 European countries in 2008 used to obtain an estimate of the numbers of cancer cases and deaths in Europe in 2008.
2,358 citations
TL;DR: The aim was to initiate worldwide surveillance of cancer survival by central analysis of population-based registry data, as a metric of the effectiveness of health systems, and to inform global policy on cancer control.
1,866 citations
TL;DR: The routines in place at the CRN yields comparable data that can be considered reasonably accurate, close-to-complete and timely, thereby justifying the policy of the reporting of annual incidence one year after the year of diagnosis.
726 citations
References
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Book•
31 Dec 1997
TL;DR: The aim of this study was to establish a database of histological groups and to provide a level of consistency and quality of data that could be applied in the design of future registries.
Abstract: 1. Techniques of registration 2. Classification and coding 3. Histological groups 4. Comparability and quality of data 5. Data processing 6. Age-standardization 7. Incidence data by site and sex for each registry 8. Summary tables presenting age-standardized rates 9. Data on histological type for selected sites
10,160 citations
01 Jan 2006
2,650 citations
TL;DR: The routines in place at the CRN yields comparable data that can be considered reasonably accurate, close-to-complete and timely, thereby justifying the policy of the reporting of annual incidence one year after the year of diagnosis.
726 citations
"Evaluation of data quality in the c..." refers methods in this paper
...This method is applied by Larsen et al.(24) to the Cancer Registry of Norway data to estimate the completeness for each cancer site, given the estimated dependencies were mainly (weakly) positive between notifications by clinicians and death certificates, and from clinicians and pathologists, but negative between pathologists and death certificates....
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...The method has been used to examine the effect of incomplete registration on estimates of survival in Thames Cancer Registry (United Kingdom) and Finland,33 and is applied to assess the completeness of registration in 1999 in the Cancer Registry of Norway.24 The flow method provides estimates of completeness of registration in a given year at successive time intervals following the end of that year (see Fig....
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...This method is applied by Larsen et al.24 to the Cancer Registry of Norway data to estimate the completeness for each cancer site, given the estimated dependencies were mainly (weakly) positive between notifications by clinicians and death certificates, and from clinicians and pathologists, but negative between pathologists and death certificates....
[...]
...The method has been used to examine the effect of incomplete registration on estimates of survival in Thames Cancer Registry (United Kingdom) and Finland,(33) and is applied to assess the completeness of registration in 1999 in the Cancer Registry of Norway.(24) The flow method provides estimates of completeness of registration in a given year at successive time intervals following the end of that year (see Fig....
[...]
716 citations
TL;DR: Africa, Central and South, and Caribbean Argentina, Chaco 11 0.5 0.4 0.17 0.02 Chile, Concepcion 6 0.2 0.06 0.03 Brazil, Aracaju 4 0.3 0.05 0.01 0.04 0 − *Brazil, Goiânia 17 0.6 0.24 0.08 0.07 0.09 *South Africa, Eastern Cape 5 0.1 0.11 0
583 citations
"Evaluation of data quality in the c..." refers methods in this paper
...The regional standards were derived as the mean and variance of values of the sitespecific age-standardised incidence rates, and were calculated from the contributions to Volume VII of CI5.(3) Statistically significant differences in the observed values from those of the standard were flagged....
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...The regional standards were derived as the mean and variance of values of the sitespecific age-standardised incidence rates, and were calculated from the contributions to Volume VII of CI5....
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..., 1994).(3) 762 E U R O P E A N J O U R N A L O F C A N C E R 4 5 ( 2 0 0 9 ) 7 5 6 – 7 6 4...
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