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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", ideally, 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. For CanScreent5, to be considered as a "programme", at least the commitment from the government and screening protocol should be in place.

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.

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:
Organized cancer screening, as traditionally interpreted, is a resource-intensive public health activity requiring substantial investments into health service infrastructure, human resources, information system and quality assurance. The term has often been used interchangeably with "population-based screening". A recent international consensus publication on the essential components for an organized cancer screening programme brings the idea that organization of a screening programme is a stepwise process, in which programmes can vary from low to highly organized, depending on the number of components implemented. Below is the list of the essential components (according to that publication): • Cancer screening programme has a protocol/guideline describing at least the target population, screening intervals, screening tests, referral pathway, management of positive cases
• There is a system in place for identifying the target population
• There is a system in place for inviting eligible individuals for screening
• Cancer screening programme has a policy framework from the health authorities defining governance structure, financing, goals and objectives of the programme
• Performance of screening programme should be evaluated with appropriate indicators
• The protocol/guideline should at least describe: monitoring and evaluation
• There is a system in place for notifying the results & informing about follow up
• There is a system in place for sending recall notice to the non-compliant individuals
• Auditing of the programme
• A specified team/organization is responsible for quality assurance/ improvement
• Performance of cancer screening programme is evaluated, published and widely disseminated on a regular basis
• All activities along the screening pathway are planned, coordinated and evaluated through a quality improvement framework (quality assurance)
• An evidence-based protocol/guideline developed in consensus with majority of stakeholders
• An information system exists with appropriate linkages (between population databases, screening information, cancer registry, etc.) for screening implementation & evaluation
• The screening programme has a provision of continued training for service providers
• Performance of screening programme should be evaluated with reference standards for the indicators

Targeted Screening:
A nationally delivered proactive screening programme which aims to improve health outcomes in people with the condition being screened for, among groups of people identified as being at elevated/above average risk of a specific condition. Compared to the general population, the people targeted may have higher risk because of lifestyle factors, genetic variants or having another health condition. Targeted screening differs from population screening as it aims to identify groups of people with a higher risk of a specific condition beyond demographics such as age, gender. For example, individuals who smoke are at a higher risk of developing lung cancer regardless of their age or gender.

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.

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