AVAILABLE STANDARDS FOR CANCER REGISTRY SYSTEMS: A SYSTEMATIC REVIEW
A SYSTEMATIC REVIEW OF AVAILABLE STANDARDS FOR CANCER REGISTRY SYSTEMS: ANALYSIS OF OBSERVED STANDARDS IN CONTINIENT AND COUNTRY LEVELS
Cancer is the generic term for the category of chronic diseases that make cells in human body grows, and spread to other part of body outside their normal limit. While the weight of these disease are noticeably increasing, and it has more morbidity and mortality cases than any other chronic diseases [1-6], yet burden and incidence knowledge are yet to be known [7-9].
Cancer registry is an information system designed for the organization of collected cancer data, storage, management, analysis and interpretation of cancer incidence [10-11]. Cancer registries system remains the rich source of information for a wide diversity of public health and other important cancer surveillance systems [12-14]. It is an important tool that is used to determine and understand cancer burden in a particular settings, and inform the authority about the current trend in order to establish an appropriate cancer control plan at all level of care [15-16]. They have been playing a crucial role in cancer management, measuring outcome, resource allocation, and enabling decision-making process [5, 17-18].
Over the past five decades, cancer incident data have gradually become available for more cancer types, data quality gauge have become more in-depth and mixed, and comparisons between registries have increasingly included descriptions of the registration techniques used[19-20].
Lack of quality patient data is one of the major contributions to poor management of cancer incidence . The need for data quality and reliability of cancer incidence data for case management is an important aspect in understanding the occurrence for effective control planning [3, 12, 21-22].
Standardized cancer registry data remains one of the most efficient ways to plan the evaluation of epidemiological research on all aspects of cancer control [23-26]. Cancer registries system collects as complete meaningful and accurate information as possible. This includes clinical report of the disease, as well as demographic patient data, tumour, hospital, and relevant physician details. When this data is put together with the additional information relating to treatment and follow-up, metastases as well as date and cause of death if available, a complete and invaluable cancer registry database is created [12, 27-31]. This data may possibly be used in many fields: aetiological and epidemiological investigation, care planning, primary and secondary prevention, benefiting both patients and society [5, 10, 12, 27-28, 32]. Data collected for the purpose of a registry in the absence of standards contribute little beyond unreliable results toward subject management and control plan [33-34]
Since the establishment of the Cancer Incidence in five Continent series (CI5), the number of cancer registry populations for which data are obtainable as the contributor has improved noticeably from just 34 populations in Volume I to 424 populations in Volume X . As a result, the data accessible from cancer registry populations, which lead to the amount of available information about each cancer registries, has also increased .
An urgent need for more standard cancer registries especially in developing countries are required, as only about 2% of population are covered from Africa, 6% from Asia, and 8% from Central and South America, where cancer burden are doubling and already recognized as a major health problem [3-4, 36-40].
Although there are many available review articles regarding information system standards [41-44], however, none of them are directly on cancer registry standards. Loane M., et al. reviewed the guidelines and standards for telemedicine . Awaysheh A., et al. reviewed medical terminology standards and structured reporting . Schreiner-Karoussou A., reviewed the image quality standards to control digital x-ray system . And, Lena Stromback, et al. reviewed the standards for data exchange within system biology . In order to ensure synchronization in the way in which we collect, validate and guarantee a baseline level of data quality in registries, standards are normally needed to determine and implement common rules. Especially within the divest environment, where excessive varieties generate inefficiencies or hinder effectiveness [45-46].
Even though, diverse standards may have been beneficial in different cancer registries, which are there to ensure accuracy and promote the use of registries’ data, four quality indicators (Completeness; Comparability; Timeliness; and Validity) have been described for Population Based-Cancer Registries (PBCR) by IARC [5, 47], and there is lack of comprehensive list of those standards in the literature.
This study intends to identify, assess, and itemize all the available standards related to cancer registry and their popularity in their development within different regions and countries where they are observed. We describe each standard according to their disparity and correlation between different countries from the most to the least observed standards in regard to available cancer data.
Source of information
Electronic journals and databases were used as sources for identified study materials. The databases incorporated PubMed, Proquest and Web of Science. Gray literatures were identified for published and unpublished works using Google search engine and manual search which includes professional bodies’ web sites. The journals included are European Journal of Cancer, Journal of Registry Management, and other related journals . Literatures were assessed for relevance by reading their titles. Relevant titles were accessed and summarized by reading their abstracts. References in the retrieved articles were reviewed to discover any additional sources of information. All the information sourced was then compacted and combined under the key topics to identify and remove duplicates .
Strategy for literature search
Online systematic search was conducted between the periods of 4th July, 2017 to 31stJuly, 2017 to identify literatures that described any beneficial standards for cancer registries; standards for disease reporting; and standards for developing disease registry or cancer reporting system [50-51]. Topics of particular concern includes; standards for disease reporting system, cancer registry system standards, best practice on cancer registration, data quality services, and registries performance indicators .
Search strategy keywords includes: “cancer registr*”, “cancer reporting”, “cancer reporting system”, “cancer registr* system”, “disease registr*”, “disease reporting”, “disease registr* system”, “registr* standards”, “data quality indicator”, and “Cancer registry development”. Search terms combinations were used according to the research theme and question. The Boolean operators and Medical Subject Heading (MeSH) was used in PubMed to identify relevant studies. A title/abstract advance search was performed using the above keywords term with the “AND” operator. Filter for study design, date, or Language restriction was not applied. A total record of 2,613 was retrieved; result searches where joint and duplicates were removed. [48-49, 51]. References were managed using Endnote software.
For this study, articles were assessed and identified for relevancy by reading their titles first, then followed by reading the abstracts . Articles describing standard cancer registry system development, population based cancer registries system, hospital based cancer registries system, cancer management system, cancer monitoring system, cancer registration information system, history of cancer registration, structured of disease registry system, data quality indicator, evaluation of cancer registration, and any relevant public health registry data standards were included in the review . Exclusion criteria included registry systems studies that are only on cancer incidence, burden of cancer for specific site (i.e. lung cancer), cross sectional studies of different cancer types, registry report for cancer morbidity and mortality, cancer survivors, and cancer care reported outcomes were not eligible for inclusion .
Data extraction and study selection
A total of 2,613 citations were identified through the Pub Med, Proquest, and Web of Science database searches. Google search engine are used to identify for standards setters documents and other potential gray literatures.1,362 unique search results remained after duplicates were removed . Subsequent to reviewing the titles, 1,170 articles were unwanted and 192 articles remained for abstracts screening. 138 records that are not related to standards cancer registry were set aside, 13 articles were also excluded because full-texts were not available, and 4 articles were in German language. 37 relevance articles full-text were retrieved for more specific inspection and eligibility .
37 articles that finally met the inclusion criteria were included in the study (figure 1: shows the PRISMA flowchart). The literatures included in this study has defined the standards for cancer registration and those explained the variability among different cancer registry standards setters, which enhance quality of cancer data for better management planning . Information identified in this study includes standards for cancer registry systems, and data quality indicators observed, are presented in table 1.
Additional records identified through other sources
Records identified through database searching
(n = 2,613)
(n = 1,251 )
Records after duplicates removed
(n = 1,362 )
Records excluded (n = 1,308). Where 1,170 excluded on title screening and 138 no relevance standards information
(n = 1,362)
Potential Full-text articles assessed for eligibility
(n = 54)
Full-text articles excluded
(n = 17), 13 full text not available, and 4 excluded were in German language
Studies included in qualitative synthesis
(n = 37)
Fig 1: PRISMA Flowchart for study selection.
Description of selected studies
Thirty seven (37) articles that finally met the inclusion criteria were included in this study. Information included regarding identified studies, includes: the authors, reference, published year, Country/region and the indicators observed, are presented in table 1. Those literatures included in this study details different standards for cancer registration system and the variability among different cancer registry standard setters, which are used to enhance quality of cancer data for better management . The articles included represent different regions, and aspect of quality registration techniques (table 1).
Objectives and Specifications for cancer reporting system standards
Numerous items for developing and supporting cancer registries were evaluated in the studies which we have found. Thirty three studies (89.1%) are of Cancer Registration, that they discussed different standards for cancer registry system. Four studies (10.8%) had presented features, standards, and comments on cancer biobanks; and tissue banks systems integration with cancer registries .
Several standards are currently presented by different institutes from different countries. Nineteen countries are represented in this review, six countries from Europe, four from Asia, four from Caribbean, Central and South America, two from North America, two from Oceanic, and one from Africa. US is the most frequent country with highest number of publications (9); followed by France with 5; Germany, Sweden and Japan each has 3 publications; Canada, Switzerland, and Australia each appeared in 2 papers; then, 1 article each appeared from New Zealand, Iran, Mexico, Nigeria, Cuba, Colombia, Martinique, and Pakistan.
In total, 19 standards have been observed, striving to assure quality data are produce in various registries. The US has the highest number of standards observed 18; followed by 16 in Canada and Japan. France observed 15 standards and 13 in Australia. 12 quality indicators observed in Germany and Norway; 10 from Sweden, Cuba and Mexico. 9 standards are observed in Switzerland and the UK; 8 in New Zealand; 7 in Iran and Martinique; 6 in Pakistan; and 4 standards in Nigeria and Colombia.
As can be seen in table 2; comparability is the most commonness among all the 19 standards observed, is reported by 33 articles (89.1%) in all the countries under this review. Accuracy is the second most frequent standards indicator, reported by 30 articles (81%) in 17 countries, followed by data quality in 29 articles from 14 countries. 27 articles (72.9%) from 12 countries reported: minimum dataset, standardized definition and availability of information. Completeness is observed in 25 publications (67.5%) in 15 countries; consistency and data management from 22 articles (59.4%) in 12 countries. Timeliness and security observed from 19 articles (51.3%) in 12 countries; reliability 18 articles (48.6%) in 10 countries. Validity observed in 15 articles (40.5%) in 12 Countries, compatibility from 12 papers (32.4%) in 6 countries. Confidentiality is from 10 articles (27%) in 5 countries, privacy from 6 articles (16.2%) from 2 countries. Comprehensive is reported by 4 articles (10.8%) from 3 countries, then integrity in 3 articles (8.1%), and strict in 2 articles (5.4%) from 2 countries.
As least virtue among the standards indicators, strict is only been observed in Japan and the EU; integrity is observed in Germany, EU and the US; followed by Comprehensiveness which is practically in Australia, Canada, EU and the US; then privacy which is also noticed only in Japan, EU and the US.
Table 1: List of the Papers standards observed
|S/N||Authors & Reference||Country / Year||Types of system||Standard observed|
|1||Phyllis A. Wingo et al. ||US / 2005||Chronic & Communicable diseases/ Active & Passive||√||√||√||√||√||√||√||√||√||√|
|2||Oregon State Cancer Registry||US / 2009||Cancer registry
|3||Herman Menck et al. ||US / 1994||Cancer registries||√||√||√||√||√||√||√||√|
|4||Commission on Cancer. ||US / 2016||Cancer registry||√||√||√||√||√||√|
|5||ME McCuskey et al. ||US / 2012||PBCR||√||√||√||√||√||√||√||√||√||√||√||√||√||√|
|6||Laura A. McClure et al. ||US / 2016||Cancer registry||√||√||√||√||√||√||√||√||√|
|7||SK. Mohanty et al. ||US / 2008||Cancer biobank||√||√||√||√||√||√||√||√||√|
|8||AM. Marchevsky et al. ||US / 2005||Thoracic
|9||Jim Hofferkamp. ||US & Canada / 2008||Cancer registries||√||√||√||√||√||√||√||√||√||√||√||√||√||√|
|10||Bartha M. Knoppers et al. ||Canada / 2000||Cancer surveillance||√||√||√||√||√||√||√||√||√||√||√||√||√||√||√||√|
|11||Paul Henry Yerrell et al. ||Australia / 2016||Cancer registration
Advanced Cancer Data System; (ACaDs)
|12||Graham G. Giles & Vicky Thursfield. ||Australia & New Zealand / 2004||Cancer registries||√||√||√||√||√||√||√||√|
|13||Jerzy E. Tyczynski et al. ||EU / 2003||European network of Cancer registries||√||√||√||√||√||√||√||√||√||√||√||√|
|14||Freddie Bray et al. ||France & Switzerland / 2015||Population based Cancer registry||√||√||√||√||√||√||√||√||√|
|15||Jacques Ferlay et al. ||France / 2014||Cancer registry||√||√||√||√||√||√||√||√||√||√||√||√||√|
|16||O.M. Jensen et al. ||France / 1991||Cancer registries||√||√||√||√||√||√||√||√||√||√||√||√|
|17||Joakim Dillner. ||Sweden / 2015||Biobanks and cancer registries||√||√||√||√||√||√||√||√||√||√|
|18||Hilde Langseth et al. ||Nordic / 2010||Cancer registry & biobank. Web based||√||√||√||√||√||√||√||√|
|19||Holleczek Bernd and Alexander Katalinic. ||Germany / 2017||Cancer registries
Web based / automated
|20||A.G. Tafazzoli et al. ||Germany / 2002||Cancer registry / decision support. Automated||√||√||√||√||√||√||√||√|
|27||Japanese Association of Cancer registries. ||Japan / 2010||Cancer registry||√||√||√||√||√||√||√||√||√||√||√||√|
|28||Naoyuki Okamoto. ||Japan / 2008||PBCR
Paper, system based
|29||Takahiro Higashi et al. ||Japan / 2014||HBCR||√||√||√||√||√||√||√||√||√|
|30||Hamideh Salimzadeh et al. ||Iran / 2014||Cancer Registry||√||√||√||√||√||√||√|
|31||Bhurgri Yasmin et al. ||Pakistan / 2002||PBCR||√||√||√||√||√||√|
|32||Rishika Banydeen et al. ||Caribbean / 2015||Cancer registry||√||√||√||√||√||√||√|
|33||Yelda A. Leal et al. ||Cuba & Mexico / 2016||Cancer registry||√||√||√||√||√||√||√||√||√||√|
|34||Monica S. Sierra & David Forman. ||Central and South America / 2016||Cancer registries||√||√||√||√||√||√||√||√||√||√|
|35||Monica S. Sierra, et al. ||Colombia / 2016||Cancer registry||√||√||√||√|
|36||Okabia M. N. ||Nigeria. / 2003||Population Based Cancer registry||√||√||√||√|
|37||D. Maxwell Parkin, et al. ||Africa / 2014||Cancer registries||√||√||√||√||√|
|Key note: S1 = Basic data items; S2 = Standardized definition; S3 = Availability of information; S4 = Strictness; S5 = Accuracy; S6 = Timeliness; S7 = Completeness; S8 = Reliability; S9 = Data quality;
S10 = Integrity; S11 = Security; S12 = Confidentiality; S13 = Comprehensive; S14 = Privacy; S15 = Consistency; S16 = Data management; S17 = Comparability; S18 = Compatibility; S19 = Validity
Table 2: Distribution of standards observed by countries
|s/n||List of Standards||Sweden||Australia||US||France||Japan||Nordic||EU||Canada||France /Switzerland||Germany||Pakistan||Martique||Cuba / Mexico||Iran||Nigeria||Africa||Central and South America||Colombia||New Zealand|
|1||Common basic set of data items||√||√||√||√||√||√||√||√||√||√||√||√||√|
|3||Availability of information||√||√||√||√||√||√||√||√||√||√||√||√||√||√||√|
|11||Security & protection||√||√||√||√||√||√||√||√||√||√|
With the establishment and development of information and computer technology, data accessibility has increased and can now be made available online in much more detail than was possible. However, data of cancer burden are yet to be fully accessible [12, 78-79].
On this review, we focus on the standards indicators found available striving to ensure quality and availability of reliable cancer data. The available standards indicator we focused on, are those we found in the literature. Many of the countries in which standards are found in this research are developed nations. We categorized the observed standards into five different levels: poor, low, middle, good, and very good. One to four standards observed represent poor category, five to eight represent low category, nine to twelve as middle level category, thirteen through sixteen symbolize good category, and seventeen to nineteen stand for very good category level.
Standards for cancer registry among the review registry in this study was relatively high, the proportion range from 2 publications (5.4%) under poor category, 9 publications (24.3%) under low category, 21 articles (56.7%) in middle level, and 5 publications (13.5%) within the good level category. Though, no single reviewed article reported under very good category level; merging the articles published from similar country permit the US into the very good category level (Figure 2).
The disparities among regions on the basis of percentages are explained. North America shows high, which have 16 standards observed (84.2%) in single article. 13 standards (68.4%) are observed from Oceanic region in single publication, as well as from the European Union. 12 standards (63.1%) are observed from Asia. 10 standards (52.6%) from Central and South America, including Caribbean region. And 5 standards (26.3%) are in operative in Africa (Figure 3). Although the indices vary among registries [34, 80-81], little variation is in reality between the North American countries. Reason might be due to long standing registry organization and the effort of North American Association of Central Cancer Registries (NAACCR) coordination’s for cancer registry standards setters; that has been in existence since 1987 . In Europe, European Network of Cancer Registries (ENCR) and the Association of Nordic Cancer Registries are working to ensure uniformity of standards and promote best practice within the member states [11, 82], although there is call on European cancer registries to reduce the erroneous by reaching the consensus on combine standards .
Partial variation among Oceanic countries was noticed, in Australia and New Zealand (ANZ) entire populations are covered as registration for cancer is mandatory by law for the past 30 years . In recent years, just French Polynesia cancer data has not been included in CI5 volume X from the region .
In Asia, although two supra national organizations are in operation in Western Asia: the Middle East Cancer Consortium (MECC) which established Cancer Registry Project (CRP), and the Gulf Center for Cancer Registration . There has been no similar supra-national body yet in South Asia, South East Asia, and North East Asia. Malcolm A. Moore et al., report that, progress to establish Asian Cancer Information Network in North-East Asia by Japan is in place, and similarly, Thai Cancer institute provides various program to support cancer registries within the South and the South-East Asian countries. Major variability among Asian registries was noticed, where registries from Japan show significant data quality and several publications on cancer as stated by [16, 84]. This should be as a result of having strong policy and Japanese Association of Cancer Registries.
In Iran and Pakistan, publications about quality evaluation of national cancer registry system , and implications of registry data for the national plan along with reports on quality control have appeared in literature. Many nations are making effort to lunch national program for cancer registry. Iran Center for Disease Control and Prevention, Ministry of Health and Medical Education established passive registration since around 1999 , and National Program of Cancer Registry by Ministry of Health of China established 2008 ; several countries in the same region such as Armenia, Azerbaijan, Georgia, Tajikistan, Turkmenistan, Kazakhstan, and Uzbekistan has no data or publications related to cancer registry  and need for health care reform are explored [36, 86].
Caribbean, Central and South American region experience huge variation of standards among registries and data quality, and differences in completeness cannot be taking into account [4, 76]. Despite the fact that efforts are in place to promote and enhance the number of registries, as Jamaica, Puerto Rico, Martinique, Cuba, and Colombia have contributed quality data for World Health Organization (WHO) publications [4-5], most of the countries in this region are lacking cancer data at national level, even the quality data are classified based on three level (low, medium & high), and some registries depend on using ENCR recommendations .
Like other developing nations, it is similar in Africa. With all the efforts of WHO to develop and promote National Cancer Control Programmes, yet standards for cancer registration cannot be determined where registries operate at different levels (local, regional and national), and policy on cancer control is lacking [10, 77]. The available cancer data within the African countries were rated to be at low quality in some countries (i.e. Egypt and South Africa) and medium quality in other part, as only about 1% registries cancer data out of 11% population covered by population-based cancer registries met the IARC quality criteria for inclusion in CI5 [10, 87], and the variation of coverage vary between 2% to about 90% with serious bias on rural to urban .
Figure 2: The disparity of standards observed among different countries
Figure 3: The disparity of standards observed under the different regions
Those countries with higher standards are more of developed. By law, reporting cancer cases is mandatory in North America, and most part of Europe, including Oceanic. Consensus by network among different registries nearly promotes uniform standards from those regions with high standards observed. NAACCR activities show numerous organization in promoting uniform data standards, and other related registry program [16, 18].
Looking at this fact, when compared with the proportion of registry population coverage, it demonstrate huge disparity among countries in Africa, Asia, and Central and South American regions  where government policy on cancer registration is yet to be mature in some countries . Our review discovered that this disparity is as a result of lack of multi-partner overseeing organization  that can promotes, coordinates and ensure uniform standards for maintaining cancer registry activity. This proves the finding of Crocker-Buque et al, where 19 (73%) of 26 registries identified, failed to meet above five of the fifteen quality criteria in sub-Sahara Africa .
Without observing standards at registry level, National Control Program cannot access quality data from the registry for cancer control plan. While admitting that the most improved countries on cancer registration such as Canada and the US haven’t observed all the standards under this review, those countries that don’t have central coordinator, have less standardization rather than those that has, and high prevalence of cancer has been predicted from those countries. In order to facilitate the standards at different level of cancer registry, the justification of NAACCR and that of ENCR analogy as umbrella body is clearly desired especially in developing countries, political willingness will not be overemphasize in ensuring legislative patronage for central management.
The purpose of this research was to identify, access, and details any available standards that can improve the cancer registration process, as well as other disease registries, and data quality. These were achieved. The study goals were to figure countries where high and low standards are observed and the proportion between the standards and quality of data under the ascertain spot; these were also achieved. Quality data allows for monitoring change in incidence over time. Our conclusion features the need for common multi-partner consensus organization at sub-national, national and regional level among public and private health agencies. More research are needed in order to explored additional data quality indicators, so as availability and quality of cancer data will improve.
It is recommended that, the following suggestions should be considered to adhere to standards and data quality in the cancer registries:
- Multidisciplinary committee on cancer (at local registry operational and national level)
- National Association of Cancer Registries
- Transnational Committee on Cancer
- Regional Network for Cancer Registration
- Periodic meeting to revise the procedures
- Cancer Registrars training programs
- Conferences on Cancer quality management program
- Establishment and review of quality control program to checkmate the registration procedure and develop reward for best registrar and or registry
- Regional guideline in line with national or local registration guidelines
- Ensure registry data are published to guarantee success
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