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Abbreviations

CBE: clinical breast examination
CIN: cervical intraepithelial neoplasia
CIS: carcinoma in situ
DBT: digital breast tomosynthesis
FIT: faecal immunochemical test
FS: flexible sigmoidoscopy
gFOBT: guaiac faecal occult blood test
HPV: human papillomavirus
Mx: mammography
PBCR: population-based cancer registry
QA: quality assurance
TC: total colonoscopy
US: ultrasound
VIA: visual inspection with acetic acid


Key definitions

Screening programme:
It is 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 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.

Sub-national programme:
A screening programme implemented at sub-national level is sub-national programme. Sub-national level indicates 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.).

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 is known as population-based programme. The programme has a mechanism to identify the eligible individuals and send personal invitations to the eligible individuals to attend screening. Such invitations can be through letters, electronic messaging, primary care, community health workers or by other means. Population-based screening may be implemented nationwide (preferably) or regionally. Moreover, population-based programme is expected to be a highly organized screening programme. We define the status of implementation as either fully established or phased implementation ongoing:
  • Fully established: the centrally coordinated programme has managed to establish the screening, diagnostic and treatment services throughout the region/country under consideration to ensure that almost the entire population of the region/country has access to such services;
  • Phased implementation ongoing: the centrally coordinated programme has managed to establish the screening, diagnostic and treatment services only in some parts of the region/country under consideration with a policy to expand throughout the region/country in the near future.

Non-population based screening (or opportunistic screening):
Screening activities outside a population-based 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 non-population or opportunistic screening. Although not a population-based screening, such screening settings can present different levels of organization and coordination. For instance, it can be performed according to a documented screening policy, following a defined protocol, system of quality assurance, etc.

Organized screening programme:
A highly organized programme is expected to fulfil all or most of the following criteria:
  • There should be a documented policy to provide quality-assured screening, diagnostic and treatment services to all eligible population with equity. The policy should also specify the structure of management, organization of services and maintaining coordination between all stakeholders;
  • A written protocol specifying the target population, methods of identifying and inviting the eligible population, screening and further assessment protocol, call-recall system, referral mechanism, etc. should be followed by all levels of service providers and programme managers;
  • Adequate manpower, infrastructure and financial resources should exist to sustain screening of the entire target population at a regular interval and further investigate the individuals tested positive;
  • Sufficient resources should be available to build infrastructure, engage sufficient number of trained providers, maintain regular supply of consumables, servicing facilities and have appropriate sustainability;
  • Presence of an information system linking the population registers to the screening database that will allow identification of the eligible population and invite them to ensure high screening coverage;
  • The programme should have a robust system of quality assurance based on regular collection of performance data through an effective health information system. The performance should be evaluated using a set of validated indicators and standards and appropriate actions should be taken if any deficiencies are detected. A good proportion of the total screening programme budget should be allocated to implementation of quality assurance.

Pilot programme:
Pilot programme is a small-scale implementation of screening programme to assess feasibility, acceptability, impact on health services, barriers and facilitators of participation, etc. The Ministry of Health/Health Authority is already 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 in the area under consideration at the time of implementing the pilot.

Demonstration project:
Demonstration project is defined as screening implemented by or in collaboration with the Ministry of Health/Health Authority on a small scale to address one or several implementation issues. There is no documented policy or a commitment to scale up.

Research project:
A research project screening is conducted by an entity (usually an academic body) to address a specific research question. Sometimes it is difficult to differentiate between demonstration and research projects. A research project more focusing on implementation and with active involvement of the Ministry of Health/Health Authority should be considered as a demonstration project.

Screening policy:
It is a policy for a particular 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, follow-up strategies, and requirements for payment or co-payment, if applicable.

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, screening interval, further assessment strategies, referral system pathway, and quality assurance.

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

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

Further assessment:
Additional diagnostic techniques (either immediately after screening or postponed in a referral setting) performed to confirm the diagnosis of a perceived abnormality detected at the screening examination. Example: colonoscopy for a FIT positive individual or diagnostic mammography for a woman with abnormal screening mammography.

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 invasive cancer are actively contacted to ensure compliance with further management (treatment).

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 standards, such as the peer review and evaluation of facility's staff qualifications, equipment performance, laboratory, pathology, endoscopy, radiology quality control and quality assurance programmes.

Screening test, diagnosis, treatment free of charge:
Public funding (with or without co-payment by insurance) to ensure no out-of-pocket expenditure by the individual for availing the screening, diagnosis, treatment services.

Screening kit included:
A sampling kit is provided with the invitation to screening, e.g. a kit for self-sampling for cervical cancer screening or a kit for FIT test for colorectal cancer screening.

Screen and treat:
Individuals with a positive screening test receive immediate treatment. This is mainly applicable for cervical cancer screening.

Screening registry:
The Cancer Screening Registry is an information system (computerized or paper-based) that collects, utilizes and stores cancer screening data on individual basis for programme management and reporting.
The registry supports the screening programmes by:
  • Maintaining a database of screening records of individuals;
  • Holding a single, consistent, screening history for each participant;
  • Inviting eligible persons to commence screening;
  • Reminding participants when they are due or 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 to be documented.

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 another unique identifier).

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, flip-charts, 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.



Performance indicators definitions

Performance indicators:
Performance indicators (PI) are measurable values that demonstrate how effectively a cancer screening programme is achieving its main objectives. The main purpose of PI is to assess and monitor the quality and the possible impact of a cancer screening programme.

Reference standards:
The reference standards for indicators should be based on the achievable performance levels 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 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.

Target population:
Total number of individuals eligible for screening (usually by age, but the screening programme may have additional criteria) obtained from official statistics residing in the catchment area of a screening programme (national or sub-national) as defined by the screening policy.
The target population will be "annualized" to estimate the performance indicators, if the programme reports for a particular year. For example, the total target population for a country that screens women for breast cancer at 3 years interval may be 300,000. If the programme submits data for the year 2019, the annualized target population for the year 2019 will be 300,000/3 = 100,000.

Individuals personally invited in a specific time frame:
Number of eligible individuals personally invited in the defined screening round or the reporting period (if different from the screening interval), reporting for a specific year are preferable.

Invited individuals screened in a specific time frame:
Number of eligible individuals invited in the defined screening round or the reporting period (if different from the screening interval) who undergone a screen test, reporting for a specific year are preferable. Considering the fact that there is a time lag (often a few months) between invitation and administration of screening tests, the programmes may report the number screened of the invited population within the first six months of the specific time frame. For example, if 100,000 women were invited for breast cancer screening in the year 2018, the screening (and further assessment) of the invited women may be completed only in June 2019. The number of women screened till June 2019 out of those invited in 2018 will be reported and considered for the analysis of the year 2018.

Individuals screened in a specific time frame:
Number of individuals who undergo a screening test in the defined screening round or the reporting period (if different from the screening interval), regardless if they were invited; reporting for a specific year are preferable.



Performance indicators formulas

Please note that all the formulas below should regard a cohort of invited/screened participants considering a specific time frame (a year or report period).

Invitation coverage (%):
     Number of individuals personally invited
                                                                                            x 100
                 Number of eligible population


Participation rate (%):
     Number of individuals screened out of the invited*
                                                                                                                 x 100
                           Number of individuals invited
*Considering the fact that there is a time lag (often a few months) between invitation and administration of screening tests, the programmes may report the number screened of the invited population within the first six months of the next time frame.

Examination coverage (%):
     Number of individuals screened of the eligible population
                                                                                                                               x 100
                                  Number of eligible population


Further assessment rate (%):
          Number of individuals with positive test outcome requiring further investigations
                                                                                                                                                                                        x 100
                                   Number screened for whom test outcomes are available


Further assessment participation rate (%):
                                   Number of individuals undergone further assessment
                                                                                                                                                                           x 100
      Number of individuals with positive test outcome requiring further assessment

Detection rate (per 1,000):
        Number of individuals with pathologically proven precancer/cancer detected
                                                                                                                                                                           x 1,000
                                                       Number of individuals screened


Positive predictive value of the screening test (%):
       Number of individuals with pathologically proven precancer/cancer detected
                                                                                                                                                                           x 100
            Number of screen positive individuals with further assessment 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].