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Abbreviations

For breast cancer screening:
Mx: mammography
CBE: clinical breast examination
US: ultrasound
DBT: digital breast tomosynthesis
CIS: carcinoma in situ

For cervical cancer screening:
VIA: visual inspection with acetic acid
HPV: human papillomavirus
CIN: cervical intraepithelial neoplasia

For colorectal cancer screening:
gFOBT: guaiac faecal occult blood test
FIT: faecal immunochemical test
FS: flexible sigmoidoscopy
TC: total colonoscopy

QA: quality assurance
PBCR: population-based cancer registry


Key definitions

Sub-national level:
Sub-national level indicate any government entity below the national level, regardless of the political, financial and administrative design of the country (e.g. province, state, cantonal level, etc.).

Screening policy:
A policy for a specific screening programme that specifies the government's commitment to provide screening services and defines the targeted age group and sex group, the geographical area, and other eligibility criteria; the screening test and interval; and requirements for payment or co-payment, if applicable. As a minimum, the screening protocol and repeat interval and determinants of eligibility for screening are stated.

Pilot programme:
Pilot programme indicates a small scale implementation of screening programme to assess feasibility, impact on health services, barriers and facilitators of participation etc. The Ministry of Health/Health Authority is committed to implement a screening programme and has a well-defined plan to scale up the programme based on the lessons learnt from the pilot. All the elements of screening programmes are fully functional at the time of implementing the pilot.
A pilot programme should be differentiated from a demonstration project. A demonstration project is implemented to test a hypothesis (e.g. mammography-based screening is feasible and cost-effective in a specific setting) and there is no commitment to scale up the screening services.

Screening programme:
Defined as cancer screening performed in the framework of a publicly mandated programme. To be considered a "programme" there has to be a commitment from the government to provide the screening services free of charges to the eligible population as defined by laws, statutes, regulations, or official notifications. In such cases, the eligible population, the screening test, and the screening interval, at a minimum should be defined and there should be some mechanism for monitoring and supervision.

Screening test, diagnosis, treatment free of charge:
Public funding (with or without co-payment by insurance) to ensure that there is no out-of-pocket expenditure for screening or for diagnostic and treatment services.

Screen and treat:
Individuals with a positive screening test receive immediate treatment.

Individual invitation:
An individual invitation (by letter, email, SMS, phone calls, home visits, or other methods) to the individuals in the population eligible to participate in the screening programme is sent by the coordination team, by primary health centres, or by general practitioners.

Screening kit included:
A sampling kit is provided with the invitation to collect a stool sample for colorectal cancer screening or a vaginal sample for HPV testing for cervical cancer screening.

Active contact of screen-positive cases:
Screen-positive individuals are actively contacted to ensure compliance with further assessment.

Active contact of cancer cases:
Individuals with a diagnosis of precancer or cancer are actively contacted to ensure compliance with further management.

Further assessment:
Additional diagnostic techniques (either immediately after screening or postponed in a referral setting) performed to confirm the nature of a perceived abnormality detected at the screening examination. Further assessment may take place on the same day as the screening examination or on recall. Examples: repeat smears, HPV testing, colposcopy, histology, ultrasonography, and colonoscopy.

Screening registry:
The Cancer Screening Registry (computerized or paper-based) is an information system for the collection, storage, analysis and reporting of cancer screening programme data. The registry supports the screening programmes by:
• Maintaining a database of screening records of individuals;
• Holding a single, consistent, national screening history for each participant;
• Inviting eligible persons to commence screening;
• Reminding participants when they are due and overdue for screening;
• Providing a "safety net" for participants who are at risk and have not attended further testing, by prompting them (and the healthcare providers) to have follow up tests.

Individual basis data collection:
An information system that enables the follow-up of the care path and history of each individual enrolled in the programme (data from screening, diagnosis, and treatment).

Aggregated data:
Grouped collected data that enable an overall view of the programme activity but do not include the individual details of the care path.

Population-based cancer registries (PBCRs):
A PBCR systematically collects information from multiple sources on all reportable neoplasms occurring in a geographically defined population. The purpose of a PBCR is to provide information on cancer burden and to assess possible causes of cancer in the community, as well as to carry out studies on prevention, early detection and screening, and cancer care. The registry provides a profile of the cancer burden in the population and how it changes over time, and therefore plays a unique role in the planning and evaluation of cancer control programmes

Data linked with cancer registries:
Data of individuals enrolled in the programme linked with the cancer registry data using the matching criteria (national identity number or nominal data).

Population-based programme:
A screening programme designed and managed at the central level to reach most of the population at risk according to the national screening policy. Personal invitations are sent to eligible individuals to attend screening. A call-and-recall system is in place. Population-based screening may be implemented nationwide or regionally. Implementation may be in various stages of development:
• Planning phase: a policy and a commitment to implement the programme are in place, and time-bound implementation is being planned;
• Pilot phase: a policy and a commitment to scale up across the region or country are in place, and the screening services are fully functional only in a limited area;
• Rollout ongoing: all elements of screening services are being gradually extended across the region (for a regional programme) or country (for a national programme), although the programme does not qualify to have completed rollout;
• Rollout completed: at least 90% of the eligible target population in the respective region (for a regional programme) or country (for a nationwide programme) should have received at least one personal invitation during the scheduled screening interval to attend the screening programme, and all the elements of screening programmes are fully functional in order to provide screening to eligible people;
• Demonstration project: screening is being implemented on a small scale to address one or several implementation issues, without any policy and commitment to scale up;
• Research project: research is being conducted by an entity (usually an academic body) to address a specific research question. Demonstration projects can also be research projects.

Opportunistic screening or non-population based:
Ideally screening should be provided through a population-based programme, in which there is a mechanism to identify each individual eligible to screening and invite them to undergo the tests. Screening outside a populationbased screening programme, as a result of a recommendation made by a health-care provider during a routine medical consultation, or by self-referral of individuals is known as opportunistic screening. Such examinations can be performed according to the public screening policies, where they exist.

Organized screening programme:
Screening activities carried out as an organized programme that requires (a) a defined target population, actively invited by the programme; (b) the use of homogeneous criteria and quality control activities; and (c) the evaluation of the results and quality. The differentiation between organized and unorganized screening programme is, to a certain extent, arbitrary.

Screening protocol:
A screening protocol is a detailed documented plan on how to deliver the screening activities, as a minimum, the screening protocol should include clear information on the eligible individuals, target age, screening test, examination intervals, further assessment, referral system, and quality assurance. It should be integrated into the screening policy.

Screening interval:
The interval between two screening episodes (round), within a screening programme or in an opportunistic setting.

Mass media campaign:
Informational or motivational messages delivered to large audiences through broadcast and print media (television, radio, billboards, magazines, newspapers and internet).

Small media campaign:
Informational or motivational messages delivered to individuals through brochures, leaflets, newsletters, letters, flipcharts, videos, social media, mobile phone, text message, short message service (SMS).

Group education:
Informational or motivational messages delivered to an assembled group in lecture or interactive format by trained lay people or health professional.

One-on-one education:
Informational or motivational messages delivered by one individual to another, either in person or by telephone. Maybe supported by small media or client reminders.

Quality assurance:
Quality assurance encompasses activities intended to assure and improve quality at all levels of the screening process in order to maximize benefits and cost-effectiveness while minimizing harms. The concept includes the assessment or evaluation of quality, identification of problems or shortcomings in the delivery of care, the design of activities to overcome these deficiencies and follow-up monitoring to ensure effectiveness of corrective steps. Quality assurance of the screening process requires a robust system of programme management and coordination, assuring that all aspects of the service are performing adequately.

Accreditation:
Accreditation is important for ensuring safety, quality and consistency of cancer screening activities. A series of initiatives are made to ensure cancer screening under a common set of standard, such as the peer review and evaluation of facility's staff qualifications, equipment performance, laboratory, pathology, endoscopy, radiology quality control and quality assurance programs, image quality, dose and processor quality control.

Performance indicator:
Performance indicators (PI) are measurable values that demonstrate how effectively a cancer screening programme is achieving its main objectives. The aim purpose of PI is to assess and monitor the quality and the possible impact of a cancer screening programme. These PI include screening coverage, participation rate, further assessment rate, detection rate, positive predictive value, etc.

Reference standards:
The reference standards for indicators should be based on the achievable performances of well-established screening programmes (e.g. the acceptable level, the desirable level). Enlisting the minimum acceptable standards for the core indicators will greatly help the new programmes to organize their strategies and quality assurance plan. It is also essential to score the harms (and not achieved benefits), which are associated with poor performance.



Performance indicators

Target population:
Total number of age-eligible individuals obtained from official statistics (irrespective of the screening interval) residing in the catchment area of a screening programme as defined by the screening policy.

Screening interval in months:
Interval (in months) between routine rounds of screening fixed upon the screening programme policy (12 = 1 year, 24 = 2 years, etc.).

Individuals personally invited in index year:
All individuals personally invited in the period to which the data refer (from 1 January to 31 December) of the index year for population-based screening.

Invited individuals screened in index year:
Subset of the individuals invited in the index year who received a test, considering any test performed up to June of the following year (invitation cohort).

Individual screened in index year:
Individual who received a test in the index year, regardless of when they were invited.

Invitation coverage:
[Individuals personally invited in the index year] / ([Total target population]/[Screening interval]).

Examination coverage:
[Individuals screened in the index year] / ([Total target population]/[Screening interval]).

Participation rate:
Number of individuals who received a screening test, as a proportion of all individuals invited to screening (= compliance rate): [Individuals screened in index year] / [Individuals personally invited in index year].

Positive tested cases:
Individuals who have been recommended for further assessment after the result of the screening test.

Negative tested individuals:
Individuals who have not been recommended for further assessment after the result of the screening test.

Further assessment rate:
[Number of individuals who screened positive in an index year] / ([Number of individuals who screened positive]+[Number of individuals who screened negative] of those screened in the same index year).

Further assessment participation rate:
[Further assessment performed among individuals who screened positive] / ([Further assessment performed among individuals who screened positive]+[Further assessment not performed among individuals who screened positive]).

Treatment referral rate:
[Number of individuals referred for treatment or surgery] / [Number of individuals screened].

Detection rate:
Number of histologically confirmed invasive cancers detected at screening per 1000 individuals screened: ([Number of invasive cancers detected] / [Number of individuals screened]) * 1000.

Positive predictive value of the screening test:
Likelihood that a positive result leads to the diagnosis of the disease of interest: [Number of invasive cancers detected] / [Number of further assessments performed].

Data sources

Population: The World Bank (2016)

Health expenditure: World Health Organization

Human Development Index: UNDP Human Development Report

Life expectancy: The World Bank

Cancer burden: Cancer Today (including GLOBOCAN 2012 and GLOBOCAN 2018)

Qualitative and quantitative data version 1.0: European Cancer Screening Report 2017

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                              

Frequently asked questions

What are the major differences between the European data in CanScreen5 and in the European Cancer Screening Report 2017?

There are several differences between the European data in CanScreen5 and in the European Cancer Screening Report 2017. Tools from the European Union report were simplified to enable them to be generalized and harmonized to data from other world regions. Data from the European Union report were migrated and formatted to be compatible with the new designed format.

What are the differences between the data available in CanScreen5 and those available from the WHO Global Health Observatory (GHO) database?

The GHO database provides information about the existence of national screening programmes for cervical cancer and breast cancer, and the most widely used screening methods associated with and the coverage of the national programmes. No further details about the existing programmes or other indicators are currently available in the GHO database. The purpose of the CanScreen5 database is to share more information about the characteristics and performance of the cancer screening programmes.

How frequently will CanScreen5 be updated?

Periodically, minor modifications will be made to the underlying data within CanScreen5, in order to correct identified errors. Updates of CanScreen5 will be carried out once sufficient recorded national qualitative and quantitative data are available and have been reviewed and validated by the Scientific Committee.

How does one become a contributor to CanScreen5?

The role of contributors is to collect screening data for the respective country, obtain a mandate from the ministry of health to share and submit data to the CanScreen5 web portal, review the analysed data, and contribute to this project. For further details, please contact us or send an email to canscreen5@iarc.fr.

Why are data from some countries currently missing from CanScreen5?

CanScreen5 is a new initiative, currently based on the available published data from the European Cancer Screening Report 2017. The current status of the completion of CanScreen5 worldwide coverage is shown on this map. We will gradually add new countries as we enrol new data providers.

What will be the frequency of country updates?

Country data providers will be free to update the country data on a regular basis (e.g. every year or every 2-3 years) based on the availability of quantitative data or any important programmatic changes. The IARC Secretariat will organize an annual campaign to check whether data providers have any updates about the different screening programmes.

What is the format of the harmonized data collection tools to be used by the data providers?

The harmonized data collection tools adapted for the European Cancer Screening Report 2017 were further improved to make them more broad-based and suitable for different resource settings. The current format used for qualitative and quantitative data collection can be downloaded in English and Spanish languages (PDF format):
- Qualitative:    Breast [EN][ES], Cervical [EN][ES] and Colorectal [EN] [ES]
- Quantitative: Breast [EN][ES], Cervical [EN][ES] and Colorectal [EN] [ES]

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                              

Database and website

Database Updates and Version Numbers

June 2019

Release of the CanScreen5 database version 1.0 with European Union data from the European Cancer Screening Report 2017.

February 2017

Publication of Cancer Screening in the European Union (2017): report on the implementation of the Council Recommendation on cancer screening.

Website updates

January 2020

New version of the qualitative and quantitative data collection forms

June 2019

CanScreen5 website launched with CanScreen5 database version 1.0

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                              

Errata

For enquiries, please contact us at canscreen5@iarc.fr.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                              

Acknowledgements

We would like to thank all the data providers and their teams, for their willingness to contribute their valuable data for various collaborative projects and support the collective efforts to obtain the best possible national information on the current cancer screening programmes worldwide.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                              

Website citation

Basu P, Lucas E, Carvalho AL, Sauvaget C, Muwonge R, Herrero R, Sankaranarayanan R (2019). Cancer Screening in Five Continents. Lyon, France: International Agency for Research on Cancer.
Available from: https://canscreen5.iarc.fr, accessed [day/month/year].