Available Standards for Cancer Registry Systems: A Systematic Review

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

Introduction:

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 [12]. 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 [35]. 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 [29].

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 [41]. Awaysheh A., et al. reviewed medical terminology standards and structured reporting [43]. Schreiner-Karoussou A., reviewed the image quality standards to control digital x-ray system [42]. And, Lena Stromback, et al. reviewed the standards for data exchange within system biology [44]. 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[14], 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. 

METHODOLOGY

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 [48]. 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 [49].

 

Strategy for literature search

Online systematic search was conducted between the periods of 4^th July, 2017 to 31^stJuly, 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 [49].

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.

 

Selection criteria

For this study, articles were assessed and identified for relevancy by reading their titles first, then followed by reading the abstracts [49]. 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 [51]. 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 [50].

 

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 [51]. 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 [48].

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 [48]. Information identified in this study includes standards for cancer registry systems, and data quality indicators observed, are presented in table 1.

Figure 1

Fig 1: PRISMA Flowchart for study selection.

RESULTS

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 [48]. 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 [52].

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

S1

S2

S3

S4

S5

S6

S7

S8

S9

S10

S11

S12

S13

S14

S15

S16

S17

S18

S19

1

Phyllis A. Wingo et al. [53]

US / 2005

Chronic & Communicable diseases/ Active & Passive

√

√

√

√

√

√

√

√

√

√

2

Oregon State Cancer Registry[54]

US / 2009

Cancer registry