Original Article
Page 1 of 25
Report of cancer incidence and mortality in China, 2010 Wanqing Chen, Rongshou Zheng, Siwei Zhang, Ping Zhao, Hongmei Zeng, Xiaonong Zou National Central Cancer Registry, National Cancer Center, Beijing 100021, China Correspondence to: Wanqing Chen. No.17, Pan-Jia-Yuan South Lane, Chaoyang District, Beijing 100021, China. Email: [email protected].
Purpose: To estimate the cancer incidences and mortalities in China in 2010. Methods: On basis of the evaluation procedures and data quality criteria described in the National Central Cancer Registry (NCCR), data from 219 cancer registries were evaluated. Data from 145 registries were identified as qualified and then accepted for the 2010 cancer registry report. The incidences and mortalities of major cancers and the overall incidence and mortality were stratified by residency (urban or rural), areas (eastern, middle, and western), gender, and age. The cancer cases and deaths were estimated based on age-specific rate and national population in 2010. The China 2010 Population Census data and Segi’s world population data were used for calculating the age-standardized cancer incidence/mortality rates.
Results: Data were obtained from a total of 145 cancer registries (63 in urban areas and 82 in rural areas) covering 158,403,248 people (92,433,739 in urban areas and 65,969,509 in rural areas). The percentage of morphologically verified cases (MV%) were 67.11%; 2.99% of incident cases were identified through proportion of death certification only (DCO%), with the mortality to incidence ratio of (M/I) 0.61. The estimates of new cancer cases and cancer deaths were 3,093,039 and 1,956,622 in 2010, respectively. The crude incidence was 235.23/105 (268.65/105 in males and 200.21/105 in females), the age-standardized rates by Chinese standard population (ASR China) and by world standard population (ASR world) were 184.58/105 and 181.49/105, and the cumulative incidence rate (0-74 age years old) was 21.11%. The cancer incidence and ASR China were 256.41/105 and 187.53/105 in urban areas and 213.71/105 and 181.10/105 in rural areas. The crude cancer mortality in China was 148.81/105 (186.37/105 in males and 109.42/105 in females), the age-standardized mortalities by Chinese standard population and by world standard population were 113.92/105 and 112.86/105, and the cumulative mortality rate (0-74 age years old) was 12.78%. The cancer mortality and ASR China were 156.14/105 and 109.21/105 in urban areas 141.35/105 and 119.00/105 in rural areas, respectively. Lung cancer, female breast cancer, gastric cancer, liver cancer, esophageal cancer, colorectal cancer, and cervical cancer were the most common cancers. Lung cancer, liver cancer, gastric cancer, esophageal cancer, colorectal cancer, breast cancer, and pancreatic cancer were the leading causes of cancer deaths.
Conclusions: The coverage of cancer registration has rapidly increased in China in recent years and may reflect more accurate cancer burdens among populations living in different areas. As the basis of cancer control program, cancer registration plays an irreplaceable role in cancer surveillance, intervention evaluation, and policy-making. Given the increasing cancer burden in the past decades, China should strengthen its cancer prevention and control. Keywords: Cancer registry; malignant tumor; incidence; mortality; China Submitted Mar 28, 2014. Accepted for publication Apr 8, 2014. doi: 10.3978/j.issn.2305-5839.2014.04.05 View this article at: http://dx.doi.org/10.3978/j.issn.2305-5839.2014.04.05
© Annals of Translational Medicine. All rights reserved.
www.atmjournal.org
Ann Transl Med 2014;2(7):61
Chen et al. Report of cancer incidence and mortality in China, 2010
Page 2 of 25
Table of Contents 1 Introduction……………………………………………3 1.1 Introduction of the cancer registration system…3 1.2 Development of cancer registries in China………3 1.2.1 National cancer registration program………3 1.2.2 Objective of cancer registration in China……3 1.2.3 Cancer incidence for 5 continents (CI5)……3 1.2.4 Follow-up and survival analysis………………4 2 Data collection method and indices………………4 2.1 Data collection……………………………………4 2.1.1 Data collection methods………………………4 2.1.2 Data collection indices………………………5 2.2 Data quality control………………………………5 2.2.1 Flow diagram of data quality control…………5 2.2.2 Quality control indices………………………5 2.2.3 Classification of data quality…………………6 2.3 Classification and coding…………………………7 2.3.1 Cancer classification…………………………7 2.3.2 Area classification……………………………7 2.4 Statistical indicators………………………………7 2.4.1 Average annual population……………………7 2.4.2 Sex- and age-specific population……………7 2.4.3 Incidence (mortality) rates……………………7 2.4.4 Sex and age-specific incidence (mortality) rat es………………………………………………8 2.4.5 Age-standardized rate or age-adjusted rate ( A S R ) …………………………………………… 8 2.4.6 Proportions……………………………………8 2.4.7 Cumulative rate………………………………9 2.4.8 Truncated incidence (mortality) rate…………9 2.5 Data analysis………………………………………9
3.2 Analysis of cancer registration data in 2010……10 3.2.1 Population coverage and the number of new cancer cases and cancer deaths…………………10 3.2.2 Trend analysis for the cancer incidence in China from 2003 to 2010………………………10 3.3 Cancer registry selection and data quality e v a l u a t i o n ……………………………………… 1 0 3.3.1 Cancer registry selection……………………10 3.3.2 Data quality evaluation in the 2010 national cancer registries………………………………10 3.3.3 Population coverage in selected cancer registries, 2010…………………………………10 3.4 Incidence and mortality for all cancer sites……10 3.4.1 Incidence for all cancer sites…………………10 3.4.2 Age-specific incidence rate for all cancer s i t e s …………………………………………… 1 0 3.4.3 Mortality for all cancer sites…………………13 3.4.4 Age-specific mortality for all cancer sites…13 3.5 The 10 most common cancers in China………13 3.5.1 Incidence of the 10 most common cancers…13 3.5.2 The 10 leading causes of cancer death………13 3.5.3 Incidence of the 10 most common cancers in urban areas……………………………………13 3.5.4 The 10 leading causes of cancer death in urban a r e a s …………………………………………… 1 3 3.5.5 Incidence of the 10 most common cancers in rural areas………………………………………13 3.5.6 The 10 leading causes of cancer death in rural a r e a s …………………………………………… 1 3 4 Discussion……………………………………………15
3 Results…………………………………………………9 3.1 Data in this cancer registry report………………9 3.1.1 Data sources…………………………………9 3.1.2 Coverage area………………………………9 3.1.3 Population coverage…………………………10 3.1.4 Time scope…………………………………10
© Annals of Translational Medicine. All rights reserved.
www.atmjournal.org
Ann Transl Med 2014;2(7):61
Annals of Translational Medicine, Vol 2, No 7 July 2014
1 Introduction 1.1 Introduction of the cancer registration system By definition, a cancer registry is an information system designed for the collection, storage, management, and analysis of data related to people with cancer. A registry usually covers a specific area. Cancer registries may provide accurate, up-to-date, population-based cancer data for incidence mortality and survival that are vital for decision making about cancer prevention and control. The data may also provide basic information for cancer research and cancer surveillance. According to the cancer registry report released by National Central Cancer Registry (NCCR), the incidence and mortality of cancer have been rising gradually. New cancer cases and cancer deaths in 2009 were estimated at approximately 3 and 2 million, respectively (1). Since the national cancer registration program was established by the National Health and Family Planning Commission (NHFPC, previously the Ministry of Health), populationbased cancer registration that collects information about cancer cases, cancer deaths and follow-up has spread to 31 provinces and municipalities throughout the country. Currently, the number of cancer registries is increasing, and the data quality is improving. The report has provided basic data that contribute to cancer control strategies, cancer research and clinical trials. At present, there are more than 250 cancer registries covering more than 200 million people. The cancer registration program is headed by the Bureau of Disease Prevention and Control, NHFPC and enforced by NCCR under the support of public health authorities in every province. 1.2 Development of cancer registries in China 1.2.1 National cancer registration program The National Cancer Registry Program was established by the NHFPC in 2008 to support registry investigation, technical training, data collection and data management through central financing. In 2008, based on existing cancer registries, 52 counties or cities were selected to house new cancer registries that followed registry selection principles. These new registries covered all 31 provinces and municipalities with populations over 110 million. In fiscal year 2009, 54 cancer registries were established on the basis the previous year’s work, covering 10% of the national population. In fiscal years 2010 and 2011, another 46 registries came into operation; the total number of cancer
© Annals of Translational Medicine. All rights reserved.
Page 3 of 25
registries increased to 195 and covered more than 13% of the national population. In 2012, the number of cancer registries expanded to 222, covering more than 200 million people. 1.2.2 Objective of cancer registration in China General objective: to establish and perfect the cancer registration reporting system at a country level suitable to China’s socioeconomic status and actual situation. The cancer registry should reflect cancer epidemic trends and the different cancer incidences, mortalities and survivals in different areas and different regions, and it should provide sufficient information to meet the requirements of cancer prevention and control. Stage of this objective: (I) Systematic construction phase: By 2010, the number of cancer registries should reach 100. Every province should have at least two cancer registries: one in an urban area and the other in a rural area. These registries should cover all provinces and 10% of the national population after a comprehensive evaluation by the NCCR and the current state of the cancer registration system and the integration of existing resources via continuously enhancing the construction of the registry. This objective has been achieved. (II) Standardized management phase: By 2015, the work flow of all cancer registries should be standardized and institutionalized. The data quality should meet the regulatory requirements established at the national level. (III) Sustainable development phase: By 2020, through the increased number of cancer registries and improved data quality, the cancer registration data should be representative of the country and its regions. 1.2.3 Cancer incidence for 5 continents (CI5) The International Agency for Research on Cancer/ International Association of Cancer Registry (IARC/ IACR) collects cancer incidence data from every country in the world and publishes the “Cancer Incidence for 5 Continents” report every 5 years. In 2010, the IACR called for the submission of incidence data for the years 2003 to 2007. The NCCR of China organized this submission, including data collection, data evaluation and quality control, to make sure the submitted data qualified. We submitted pooled data from 26 cancer registries for this report. After being evaluated by IACR, data from 12 registries on the
www.atmjournal.org
Ann Transl Med 2014;2(7):61
Chen et al. Report of cancer incidence and mortality in China, 2010
Page 4 of 25
NCCR Provincial health bureaus
Database creation
Duplicate cases
Abstracting and coding
Duplicates deletion
Insurance database in rural areas
death certificate cases D
Case ascertainment and follow up
Death database
Cancer registry
Case ascertainment and follow up Insurance database in urban areas
Missing cases
Database from other health bureaus
Population data from departments of statistics and public security
Figure 1 Flow diagram of the cancer registration system.
Chinese mainland were accepted, which was the highest number ever accepted. The accepted registries were from Beijing, Shanghai, the Nangang District of Harbin City, Cixian of Hebei, Yangcheng of Shanxi, Haining, Jiaxing and Jiashan of Zhejiang, Qidong of Jiangsu, Yanting of Sichuan, Zhongshan of Guangdong and Wuhan of Hubei. This achievement indicates the gradual progress of cancer registration in China, which has been widely recognized by international colleagues and has entered a new stage. 1.2.4 Follow-up and survival analysis Population-based cancer survival analysis can provide useful information that reflects the regional cancer burden and medical resources and evaluates cancer care. In the “National Program of Cancer Registry”, the importance of follow-up for cancer cases was emphasized. To enhance population-based cancer follow-up and survival analysis, NCCR began collecting survival information in some of the registries that implemented follow-up. We also joined the international survival study (CONCORD II) and prepared to submit survival data. To date, a total of 14 registries have submitted follow-up data for cancer incidence cases from 2003 to 2005. The survival analysis is ongoing. © Annals of Translational Medicine. All rights reserved.
2 Data collection method and indices 2.1 Data collection 2.1.1 Data collection methods Traditionally, reporting methods have been classified as active or passive. Active reporting involves registry personnel actually vesting the sources of data and abstracting the required information onto special forms or obtaining copies of necessary documents. Passive reporting relies on other health care workers to complete notification forms and forward them to the registry or to send copies of abstracts from which the necessary data can be obtained (Figure 1). (I) Data collecting channels. Cancer registries should collect cancer statistics, including cancer incidence, cancer deaths, cancer survival, and population data from all kinds of channels. The cancer registries may collect cancer statistics from clinics and hospitals, health insurance databases, death surveillance databases, and cooperative health insurance databases in rural areas. (II) Cancer case certification. The cancer registries are responsible for completing cancer case report www.atmjournal.org
Ann Transl Med 2014;2(7):61
Annals of Translational Medicine, Vol 2, No 7 July 2014
Cancer registries
NCCR Inconsistency
Completeness evaluation
Unqualified Validity and consistency check Qualified
Coding by ICD-10
Page 5 of 25
diagnosis, identification number, address, place of birth, race, marital status, and career, should be collected. Registries much archive the following detailed cancer data for each case: date of diagnosis; anatomical site and subsite; pathological, histological, and cytological results; diagnosis basis; and stage. The date of the reporting clinics of the diagnosis reporting bureau and reporting doctors should be collected. The follow-up information for registered cancer patients should also be recorded. (II) Mortality: information about mortality often comes from population-based death databases that also report cancer cases that died from causes other than cancer. In addition to personal cancer incidence information, the mortality data should contain each case’s date of death, age at death, cause of death, place of death, and the diagnostic basis for the cause of death. (III) Population data: the population data originate from statistics or public security census data departments. The detailed population data should cover the overall population, with age-specific data by 5-year age groups and sex-specific data.
Feedback
2.2 Data quality control Quality evaluation, data tabulation and analysis
Figure 2 Flow diagram of data quality.
forms using identification card numbers as personal identification codes. The cancer death records should also be matched with incidence case in the database. Missing incidence cases should be supplemented, and duplicated cases should be deleted. (III) Follow-up practice. Through home visits, telephone calls, mail, and email, workers should contact the cancer cases and collect survival information. 2.1.2 Data collection indices A core cancer registration service requires the collection of cancer incidence, mortality, and survival data, including data for cancers with ICD-10 codes of C00.0 to C97 (neoplasms of the central nervous systems and uncertain behaviors). Population coverage data should also be collected. (I) Incidence: the personal information for incident cases, such as age, sex, date of birth, age at
© Annals of Translational Medicine. All rights reserved.
2.2.1 Flow diagram of data quality control After receiving cancer registration data, NCCR will first check the data’s completeness. After that, IARC/IACR check software will be used to determine whether all the variables are complete and valid (2,3). The internal consistency of the dataset will also be checked. NCCR will further publish a specific data evaluation report to each registry. The local registries will follow the evaluation report to check and revise the cancer datasets once again. Qualified cancer datasets will be pooled and analyzed for the annual national cancer report (Figure 2). 2.2.2 Quality control indices The value of the cancer registry relies heavily on the underlying data quality and quality control procedures. The practical aspects for addressing data quality aim to provide qualified cancer registration data that is comparable, complete, valid, and timely (4,5). (I) Comparability: comparability is the extent to which coding and classification at a registry, together with the requirements for recording and reporting specific data items, adhere to agreed international guidelines. When evaluating the comparability
www.atmjournal.org
Ann Transl Med 2014;2(7):61
Chen et al. Report of cancer incidence and mortality in China, 2010
Page 6 of 25
Table 1 Data quality classification A
B
D
Covering the whole population
Covering the whole population or a specific population
The population coverage is not clear
Complete and solid death surveillance system
The death surveillance system is not complete with poor data quality
No death surveillance system available
The proportion of unknown basis of diagnosis
Page 1 of 25
Report of cancer incidence and mortality in China, 2010 Wanqing Chen, Rongshou Zheng, Siwei Zhang, Ping Zhao, Hongmei Zeng, Xiaonong Zou National Central Cancer Registry, National Cancer Center, Beijing 100021, China Correspondence to: Wanqing Chen. No.17, Pan-Jia-Yuan South Lane, Chaoyang District, Beijing 100021, China. Email: [email protected].
Purpose: To estimate the cancer incidences and mortalities in China in 2010. Methods: On basis of the evaluation procedures and data quality criteria described in the National Central Cancer Registry (NCCR), data from 219 cancer registries were evaluated. Data from 145 registries were identified as qualified and then accepted for the 2010 cancer registry report. The incidences and mortalities of major cancers and the overall incidence and mortality were stratified by residency (urban or rural), areas (eastern, middle, and western), gender, and age. The cancer cases and deaths were estimated based on age-specific rate and national population in 2010. The China 2010 Population Census data and Segi’s world population data were used for calculating the age-standardized cancer incidence/mortality rates.
Results: Data were obtained from a total of 145 cancer registries (63 in urban areas and 82 in rural areas) covering 158,403,248 people (92,433,739 in urban areas and 65,969,509 in rural areas). The percentage of morphologically verified cases (MV%) were 67.11%; 2.99% of incident cases were identified through proportion of death certification only (DCO%), with the mortality to incidence ratio of (M/I) 0.61. The estimates of new cancer cases and cancer deaths were 3,093,039 and 1,956,622 in 2010, respectively. The crude incidence was 235.23/105 (268.65/105 in males and 200.21/105 in females), the age-standardized rates by Chinese standard population (ASR China) and by world standard population (ASR world) were 184.58/105 and 181.49/105, and the cumulative incidence rate (0-74 age years old) was 21.11%. The cancer incidence and ASR China were 256.41/105 and 187.53/105 in urban areas and 213.71/105 and 181.10/105 in rural areas. The crude cancer mortality in China was 148.81/105 (186.37/105 in males and 109.42/105 in females), the age-standardized mortalities by Chinese standard population and by world standard population were 113.92/105 and 112.86/105, and the cumulative mortality rate (0-74 age years old) was 12.78%. The cancer mortality and ASR China were 156.14/105 and 109.21/105 in urban areas 141.35/105 and 119.00/105 in rural areas, respectively. Lung cancer, female breast cancer, gastric cancer, liver cancer, esophageal cancer, colorectal cancer, and cervical cancer were the most common cancers. Lung cancer, liver cancer, gastric cancer, esophageal cancer, colorectal cancer, breast cancer, and pancreatic cancer were the leading causes of cancer deaths.
Conclusions: The coverage of cancer registration has rapidly increased in China in recent years and may reflect more accurate cancer burdens among populations living in different areas. As the basis of cancer control program, cancer registration plays an irreplaceable role in cancer surveillance, intervention evaluation, and policy-making. Given the increasing cancer burden in the past decades, China should strengthen its cancer prevention and control. Keywords: Cancer registry; malignant tumor; incidence; mortality; China Submitted Mar 28, 2014. Accepted for publication Apr 8, 2014. doi: 10.3978/j.issn.2305-5839.2014.04.05 View this article at: http://dx.doi.org/10.3978/j.issn.2305-5839.2014.04.05
© Annals of Translational Medicine. All rights reserved.
www.atmjournal.org
Ann Transl Med 2014;2(7):61
Chen et al. Report of cancer incidence and mortality in China, 2010
Page 2 of 25
Table of Contents 1 Introduction……………………………………………3 1.1 Introduction of the cancer registration system…3 1.2 Development of cancer registries in China………3 1.2.1 National cancer registration program………3 1.2.2 Objective of cancer registration in China……3 1.2.3 Cancer incidence for 5 continents (CI5)……3 1.2.4 Follow-up and survival analysis………………4 2 Data collection method and indices………………4 2.1 Data collection……………………………………4 2.1.1 Data collection methods………………………4 2.1.2 Data collection indices………………………5 2.2 Data quality control………………………………5 2.2.1 Flow diagram of data quality control…………5 2.2.2 Quality control indices………………………5 2.2.3 Classification of data quality…………………6 2.3 Classification and coding…………………………7 2.3.1 Cancer classification…………………………7 2.3.2 Area classification……………………………7 2.4 Statistical indicators………………………………7 2.4.1 Average annual population……………………7 2.4.2 Sex- and age-specific population……………7 2.4.3 Incidence (mortality) rates……………………7 2.4.4 Sex and age-specific incidence (mortality) rat es………………………………………………8 2.4.5 Age-standardized rate or age-adjusted rate ( A S R ) …………………………………………… 8 2.4.6 Proportions……………………………………8 2.4.7 Cumulative rate………………………………9 2.4.8 Truncated incidence (mortality) rate…………9 2.5 Data analysis………………………………………9
3.2 Analysis of cancer registration data in 2010……10 3.2.1 Population coverage and the number of new cancer cases and cancer deaths…………………10 3.2.2 Trend analysis for the cancer incidence in China from 2003 to 2010………………………10 3.3 Cancer registry selection and data quality e v a l u a t i o n ……………………………………… 1 0 3.3.1 Cancer registry selection……………………10 3.3.2 Data quality evaluation in the 2010 national cancer registries………………………………10 3.3.3 Population coverage in selected cancer registries, 2010…………………………………10 3.4 Incidence and mortality for all cancer sites……10 3.4.1 Incidence for all cancer sites…………………10 3.4.2 Age-specific incidence rate for all cancer s i t e s …………………………………………… 1 0 3.4.3 Mortality for all cancer sites…………………13 3.4.4 Age-specific mortality for all cancer sites…13 3.5 The 10 most common cancers in China………13 3.5.1 Incidence of the 10 most common cancers…13 3.5.2 The 10 leading causes of cancer death………13 3.5.3 Incidence of the 10 most common cancers in urban areas……………………………………13 3.5.4 The 10 leading causes of cancer death in urban a r e a s …………………………………………… 1 3 3.5.5 Incidence of the 10 most common cancers in rural areas………………………………………13 3.5.6 The 10 leading causes of cancer death in rural a r e a s …………………………………………… 1 3 4 Discussion……………………………………………15
3 Results…………………………………………………9 3.1 Data in this cancer registry report………………9 3.1.1 Data sources…………………………………9 3.1.2 Coverage area………………………………9 3.1.3 Population coverage…………………………10 3.1.4 Time scope…………………………………10
© Annals of Translational Medicine. All rights reserved.
www.atmjournal.org
Ann Transl Med 2014;2(7):61
Annals of Translational Medicine, Vol 2, No 7 July 2014
1 Introduction 1.1 Introduction of the cancer registration system By definition, a cancer registry is an information system designed for the collection, storage, management, and analysis of data related to people with cancer. A registry usually covers a specific area. Cancer registries may provide accurate, up-to-date, population-based cancer data for incidence mortality and survival that are vital for decision making about cancer prevention and control. The data may also provide basic information for cancer research and cancer surveillance. According to the cancer registry report released by National Central Cancer Registry (NCCR), the incidence and mortality of cancer have been rising gradually. New cancer cases and cancer deaths in 2009 were estimated at approximately 3 and 2 million, respectively (1). Since the national cancer registration program was established by the National Health and Family Planning Commission (NHFPC, previously the Ministry of Health), populationbased cancer registration that collects information about cancer cases, cancer deaths and follow-up has spread to 31 provinces and municipalities throughout the country. Currently, the number of cancer registries is increasing, and the data quality is improving. The report has provided basic data that contribute to cancer control strategies, cancer research and clinical trials. At present, there are more than 250 cancer registries covering more than 200 million people. The cancer registration program is headed by the Bureau of Disease Prevention and Control, NHFPC and enforced by NCCR under the support of public health authorities in every province. 1.2 Development of cancer registries in China 1.2.1 National cancer registration program The National Cancer Registry Program was established by the NHFPC in 2008 to support registry investigation, technical training, data collection and data management through central financing. In 2008, based on existing cancer registries, 52 counties or cities were selected to house new cancer registries that followed registry selection principles. These new registries covered all 31 provinces and municipalities with populations over 110 million. In fiscal year 2009, 54 cancer registries were established on the basis the previous year’s work, covering 10% of the national population. In fiscal years 2010 and 2011, another 46 registries came into operation; the total number of cancer
© Annals of Translational Medicine. All rights reserved.
Page 3 of 25
registries increased to 195 and covered more than 13% of the national population. In 2012, the number of cancer registries expanded to 222, covering more than 200 million people. 1.2.2 Objective of cancer registration in China General objective: to establish and perfect the cancer registration reporting system at a country level suitable to China’s socioeconomic status and actual situation. The cancer registry should reflect cancer epidemic trends and the different cancer incidences, mortalities and survivals in different areas and different regions, and it should provide sufficient information to meet the requirements of cancer prevention and control. Stage of this objective: (I) Systematic construction phase: By 2010, the number of cancer registries should reach 100. Every province should have at least two cancer registries: one in an urban area and the other in a rural area. These registries should cover all provinces and 10% of the national population after a comprehensive evaluation by the NCCR and the current state of the cancer registration system and the integration of existing resources via continuously enhancing the construction of the registry. This objective has been achieved. (II) Standardized management phase: By 2015, the work flow of all cancer registries should be standardized and institutionalized. The data quality should meet the regulatory requirements established at the national level. (III) Sustainable development phase: By 2020, through the increased number of cancer registries and improved data quality, the cancer registration data should be representative of the country and its regions. 1.2.3 Cancer incidence for 5 continents (CI5) The International Agency for Research on Cancer/ International Association of Cancer Registry (IARC/ IACR) collects cancer incidence data from every country in the world and publishes the “Cancer Incidence for 5 Continents” report every 5 years. In 2010, the IACR called for the submission of incidence data for the years 2003 to 2007. The NCCR of China organized this submission, including data collection, data evaluation and quality control, to make sure the submitted data qualified. We submitted pooled data from 26 cancer registries for this report. After being evaluated by IACR, data from 12 registries on the
www.atmjournal.org
Ann Transl Med 2014;2(7):61
Chen et al. Report of cancer incidence and mortality in China, 2010
Page 4 of 25
NCCR Provincial health bureaus
Database creation
Duplicate cases
Abstracting and coding
Duplicates deletion
Insurance database in rural areas
death certificate cases D
Case ascertainment and follow up
Death database
Cancer registry
Case ascertainment and follow up Insurance database in urban areas
Missing cases
Database from other health bureaus
Population data from departments of statistics and public security
Figure 1 Flow diagram of the cancer registration system.
Chinese mainland were accepted, which was the highest number ever accepted. The accepted registries were from Beijing, Shanghai, the Nangang District of Harbin City, Cixian of Hebei, Yangcheng of Shanxi, Haining, Jiaxing and Jiashan of Zhejiang, Qidong of Jiangsu, Yanting of Sichuan, Zhongshan of Guangdong and Wuhan of Hubei. This achievement indicates the gradual progress of cancer registration in China, which has been widely recognized by international colleagues and has entered a new stage. 1.2.4 Follow-up and survival analysis Population-based cancer survival analysis can provide useful information that reflects the regional cancer burden and medical resources and evaluates cancer care. In the “National Program of Cancer Registry”, the importance of follow-up for cancer cases was emphasized. To enhance population-based cancer follow-up and survival analysis, NCCR began collecting survival information in some of the registries that implemented follow-up. We also joined the international survival study (CONCORD II) and prepared to submit survival data. To date, a total of 14 registries have submitted follow-up data for cancer incidence cases from 2003 to 2005. The survival analysis is ongoing. © Annals of Translational Medicine. All rights reserved.
2 Data collection method and indices 2.1 Data collection 2.1.1 Data collection methods Traditionally, reporting methods have been classified as active or passive. Active reporting involves registry personnel actually vesting the sources of data and abstracting the required information onto special forms or obtaining copies of necessary documents. Passive reporting relies on other health care workers to complete notification forms and forward them to the registry or to send copies of abstracts from which the necessary data can be obtained (Figure 1). (I) Data collecting channels. Cancer registries should collect cancer statistics, including cancer incidence, cancer deaths, cancer survival, and population data from all kinds of channels. The cancer registries may collect cancer statistics from clinics and hospitals, health insurance databases, death surveillance databases, and cooperative health insurance databases in rural areas. (II) Cancer case certification. The cancer registries are responsible for completing cancer case report www.atmjournal.org
Ann Transl Med 2014;2(7):61
Annals of Translational Medicine, Vol 2, No 7 July 2014
Cancer registries
NCCR Inconsistency
Completeness evaluation
Unqualified Validity and consistency check Qualified
Coding by ICD-10
Page 5 of 25
diagnosis, identification number, address, place of birth, race, marital status, and career, should be collected. Registries much archive the following detailed cancer data for each case: date of diagnosis; anatomical site and subsite; pathological, histological, and cytological results; diagnosis basis; and stage. The date of the reporting clinics of the diagnosis reporting bureau and reporting doctors should be collected. The follow-up information for registered cancer patients should also be recorded. (II) Mortality: information about mortality often comes from population-based death databases that also report cancer cases that died from causes other than cancer. In addition to personal cancer incidence information, the mortality data should contain each case’s date of death, age at death, cause of death, place of death, and the diagnostic basis for the cause of death. (III) Population data: the population data originate from statistics or public security census data departments. The detailed population data should cover the overall population, with age-specific data by 5-year age groups and sex-specific data.
Feedback
2.2 Data quality control Quality evaluation, data tabulation and analysis
Figure 2 Flow diagram of data quality.
forms using identification card numbers as personal identification codes. The cancer death records should also be matched with incidence case in the database. Missing incidence cases should be supplemented, and duplicated cases should be deleted. (III) Follow-up practice. Through home visits, telephone calls, mail, and email, workers should contact the cancer cases and collect survival information. 2.1.2 Data collection indices A core cancer registration service requires the collection of cancer incidence, mortality, and survival data, including data for cancers with ICD-10 codes of C00.0 to C97 (neoplasms of the central nervous systems and uncertain behaviors). Population coverage data should also be collected. (I) Incidence: the personal information for incident cases, such as age, sex, date of birth, age at
© Annals of Translational Medicine. All rights reserved.
2.2.1 Flow diagram of data quality control After receiving cancer registration data, NCCR will first check the data’s completeness. After that, IARC/IACR check software will be used to determine whether all the variables are complete and valid (2,3). The internal consistency of the dataset will also be checked. NCCR will further publish a specific data evaluation report to each registry. The local registries will follow the evaluation report to check and revise the cancer datasets once again. Qualified cancer datasets will be pooled and analyzed for the annual national cancer report (Figure 2). 2.2.2 Quality control indices The value of the cancer registry relies heavily on the underlying data quality and quality control procedures. The practical aspects for addressing data quality aim to provide qualified cancer registration data that is comparable, complete, valid, and timely (4,5). (I) Comparability: comparability is the extent to which coding and classification at a registry, together with the requirements for recording and reporting specific data items, adhere to agreed international guidelines. When evaluating the comparability
www.atmjournal.org
Ann Transl Med 2014;2(7):61
Chen et al. Report of cancer incidence and mortality in China, 2010
Page 6 of 25
Table 1 Data quality classification A
B
D
Covering the whole population
Covering the whole population or a specific population
The population coverage is not clear
Complete and solid death surveillance system
The death surveillance system is not complete with poor data quality
No death surveillance system available
The proportion of unknown basis of diagnosis
