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Bowel Screening Wales Health Professional Information · Genetic Conditions Familial adenomatous polyposis (FAP)accounts for around 1% of cases of bowel cancer. Patients develop hundreds

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Page 1: Bowel Screening Wales Health Professional Information · Genetic Conditions Familial adenomatous polyposis (FAP)accounts for around 1% of cases of bowel cancer. Patients develop hundreds

Bowel Screening Wales

Health ProfessionalInformation2008 | www.bowelscreeningwales.org.uk

Version 1.0

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Acknowledgements Bowel Screening Wales would like to express their sincere thanks to the English and Scottish bowel screening programmes for their help and support whilst developing the Welsh programme.

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Contents 1 Bowel Cancer 2

Background information 2

Incidence and mortality 2

Survival rates 2

Risk factors 3

Natural disease progression 3

Symptoms and signs 3

Genetic conditions 4

2 Screening 5

3 Bowel Cancer Screening 6

4 Bowel Screening in Wales 7

The screening process 8

The screening test 8

Diagnostic testing 10

5 The Role of the Specialist Screening Practitioner 14

6 The Role of the General Practitioner 14

7 Programme Evaluation 15

8 Hard to Reach Groups 16

9 Further Information 16

10 References 17

11 Appendix 1- Service Models 18

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2 | Health Professional Information

Bowel Cancer

Background Information

Incidence and MortalityColorectal cancer is the third most common cancer in Wales with over 2000new cases diagnosed each year, and approximately 1000 deaths per year(CSCG 2008). Bowel cancer is more common on the left side of the colon thanon the right, with approximately 63% of cases occurring in the colon, 29% inthe rectum and 8% in the rectosigmoid junction. The lifetime risk of beingdiagnosed with bowel cancer is around 1 in 20 for women and 1 in 18 for men.

Table 1 illustrates the incidence of colon cancer and rectal cancer in men and women (WCISU 2008).

Survival ratesTable 2 illustrates the five year survival rates according to the Dukes’ stageclassification (Cancer Research UK 2006).

Colorectal cancer is the 3rd most commoncancer in Wales

The lifetime risk ofdeveloping bowelcancer is: 1:20 forwomen 1:18 for men

2002 2003 2004 2005 2006

Males

Colon 1037 1113 1111 1135 1210

Rectal 436 437 444 465 482

Females 864 853 894 847 934

Rectal 272 284 269 277 280

Total 1971 1966 2005 1982 2144

Table 1: Incidence Rates

Dukes’ stage Five year overall survival

A 85-95%

B 60-80%

C 30-60%

D <10%

Table 2: Survival Rates

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Risk FactorsAlthough the cause of bowel cancer is not fully understood, possible riskfactors have been identified:

• Age/sex – The development of bowel cancer is strongly associated withage. More than 80% of cases occur in those aged 60 and over. Men andwomen have a similar risk of developing bowel cancer up to age 40, butafter this rates are higher for men.

• Diet and lifestyle – There is some evidence to suggest that individuals who rarely exercise, individuals who are overweight and individuals who have a diet high in red meat, low in fruit and vegetables and low in fibre are at an increased risk of developing bowel cancer.

• Family history – Less than 10% of all colorectal cancers are geneticallylinked. Individuals with either one first-degree relative diagnosed with bowelcancer before the age of 45 or two first-degree relatives diagnosed at anyage have an increased risk of developing bowel cancer. For these individuals,the lifetime risk increases to 16 -25% in men and 10 -15% in women.Having one first degree relative diagnosed with bowel cancer between 45 – 65 years of age increases the lifetime risk but not enough to justifyregular screening colonoscopy. Having one first-degree relative diagnosedwith bowel cancer at or over 65 years of age leads to only a slightlyincreased lifetime risk of developing bowel cancer.

Natural Disease ProgressionOver 90% of bowel cancer cases are adenocarcinomas, and of these, mostarise adenomatous polyps. Adenomatous polyps increase in prevalence withage, and are present in approximately one in four people by the age of 50.Studies suggest that 1-10% of polyps transform into invasive cancers. Thedevelopment of a polyp into a cancer can take more than 10 years, with largersize, villous histology and severe dysplasia being important predictors ofprogression to invasive cancer. Adenomas that are flat or depressed accountfor 10% of cases. These are characteristically harder to detect and may carrya higher risk of malignancy.

Symptoms and signsRectal bleeding, a change in bowel habit and anaemia are the most commonpresenting symptoms of bowel cancer. Nausea, weight loss, abdominal pain and anorexia may be experienced in more advanced disease. While individualsymptoms may be poor predictors of bowel cancer, the presence of acombination of signs and symptoms is more sensitive and specific.

Risk Factors Include:

Increasing Age

Poor Diet

Family History .

Symptoms of bowelcancer include:

Change of bowel habitNausea Weight loss Pain Anorexia

90% of bowel cancers arise fromadenomatous polyps.

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4 | Health Professional Information

The National Institute for Health and Clinical Excellence (NICE)recommends urgent referral for patients:• Aged >40 years who report rectal bleeding with a change of bowel habit

towards looser stools and/or increased stool frequency persisting for six weeksor more.

• Aged >60 years who report rectal bleeding persisting for six weeks or morewithout a change in bowel habit and without anal symptoms.

• Aged >60 years who report a change in bowel habit to looser stools and/ormore frequent stools persisting for six weeks or more without rectal bleeding.

• Of any age with a right lower abdominal mass consistent with involvement of the large bowel.

• Of any age with a palpable rectal mass (intraluminal and not pelvic; a pelvicmass outside the bowel would warrant an urgent referral to a urologist or gynaecologist).

• Who are men of any age with unexplained iron deficiency anaemia and a haemoglobin level of <11 g/100 ml.

• Who are non-menstruating women with unexplained iron deficiency anaemiaand a haemoglobin level of < 10 g/100 ml.

Please note:Bowel screening is a service for asymptomatic individuals. It is not theappropriate investigation for individuals with symptoms. A negative screeningtest result in a symptomatic person can give false reassurance and lead toavoidable delay in diagnosis.

Genetic ConditionsFamilial adenomatous polyposis (FAP) accounts for around 1% of cases ofbowel cancer. Patients develop hundreds or thousands of polyps in the colonand rectum in their twenties and thirties, and have almost a 100% chance ofdeveloping bowel cancer before they are fifty years old. Individuals with FAP are usually offered prophylactic colectomy in their teens or twenties.

Hereditary non-polyposis colorectal (bowel) cancer (HNPCC) accounts foraround 2-5% of cases of bowel cancer. Polyps develop at a younger age and at a greater frequency than in individuals who do not have the disease, but not in such large numbers as in FAP. HNPCC is linked to bowel cancer in youngerage groups and is the cause of around 40% of cases in individuals under 30years of age. There may be other non-colorectal associated sites affected withthe syndrome e.g. endometrium, ovary, stomach, pancreato-biliary system andurinary tract. The original definition of HNPCC has been modified to encompassthe excess risk of endometrial cancer.

Current NICE Referralguidelines forsymptomatic patients

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As a result, HNPCC is now defined as:

• three or more family members affected by colorectal cancer (CRC) or

• > 2 with CRC and one with endometrial cancer in >2 generations (oneaffected relative must be age <50 at diagnosis, one of the relatives must be a first degree relative of the other two).

As the causative genes have been identified (ICG database), fulfillment of thesecriteria is not an absolute requirement for classification as HNPCC, as colorectalcancer sufferers have been identified as gene carriers despite having feweraffected relatives than outlined above.

Enhanced surveillance by colonoscopy is advisable for people with asignificant family history whereas routine FOBt screening is moreappropriate for the general population.

Patients with a significant family history of 2 first degree relatives with bowel cancer or 1 first degree relative under the age of 45 yearswill be advised to attend their GP practice for referral to the MedicalGenetics Service.

Screening

Screening is “a public health service in which members of a defined population,who do not necessarily perceive they are at risk of, or are already affected by adisease or its complications, are asked a question or offered a test to identifythose individuals who are more likely to be helped than harmed by further testsor treatment to reduce the risk of disease or its complications” (NSC2000). TheNSC has criteria which must be satisfied prior to implementation of a nationalscreening programme.

These include:

• The condition must pose an important public health problem

• The natural history of the condition must be understood

• Early treatment must be beneficial and supported by empirical evidence

• A suitable test or examination must be available

• The test must be acceptable to the population

• The test must be reproducible

• The benefit must outweigh the harm

• Screening must be cost effective

Refer to All WalesGenetics service if significant family history.

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6 | Health Professional Information

Bowel Cancer Screening

Research EvidenceFour randomized controlled trials (RCTs) of mass population screening using the faecal occult blood test (FOBt) have been carried out: one in the UK, one in Denmark, one in the USA and one in Sweden. These trials demonstrated areduction in bowel cancer specific mortality in the screened groups, usingbiennial screening, annual screening or a combination of the two and with followup periods ranging from 11 to 18 years. A meta-analysis of these four trialsreported a 16% reduction in bowel cancer specific mortality with screening.

UK Pilot ProgrammeFollowing these demonstrations of mortality reduction, the Department ofHealth commissioned a pilot screening programme to assess the feasibility of using biennial FOBt screening as a population based screening tool forbowel cancer in the UK. Three pilot screening rounds for men and womenaged 50-69 years were successfully implemented in Coventry andWarwickshire in England and in Tayside, Grampian and Fife in Scotland. The first round of screening demonstrated that screening for bowel cancerusing the FOBt is feasible within the context of the NHS.

Table 3 shows the proportion of cancers detected by screening for each Dukes’stage during the first phase of the screening pilot in England.

The English and Scottish bowel screening programmes have been developedbased on the findings of the pilot. Both programmes use biennial FOBt homekits followed by colonoscopy if the test is positive and aim to achieve nationalcoverage by 2009.

Survival rates areimproved if diagnosed at an early stage

RCT’s demonstratedmortality from bowelcancer can be reducedby biennial FOBtscreening.

A pilot to assess thefeasibility of a biennialFOBt programme wasset up.

Stage Cancers Detected

Screening Service Symptomatic Service

Unstaged polyp cancers 17% 2%

Dukes’ stage A 25% 13%

Dukes’ stage B 26% 28%

Dukes’ stage C 25% 28%

Dukes’ stage D 2% 25%

Other unstaged cancers 5% 4%

Table 3: Stage at Detection

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Bowel Screening in Wales

The bowel screening programme in Wales will be established and managed by Screening Services, which is part of Velindre NHS Trust. The Welsh BowelScreening Centre is situated at Unit 6, Green Meadow, Llantrisant, CF72 8XTand houses the central administration department and national screeninglaboratory. All acute Trusts in Wales will participate in the programme byproviding Specialist Screening Practitioner (SSP) assessment and follow-up,together with endoscopic and radiological investigations. Initially, people agedbetween 60 – 69 years who are resident in Wales will be invited to take part.The programme will be phased in by age range (60-69, then adding thoseaged 70-74, and finally those aged 50-59 years) until screening is offered to all eligible people aged 50 – 74 throughout Wales. Self Referral into theprogramme by requesting a testing kit will not be possible until this stage is reached.

Completed test kits will be returned to the laboratory and will be processed thesame day. Administrative staff will co-ordinate the call/recall system for eligiblepeople; ensuring participants with a positive result are referred for furtherassessment to Specialist Screening Practitioners (SSP) at each of theparticipating trusts.

Administrative staff, in conjunction with laboratory screeners, will man a nationaltelephone helpline between the hours of 8.00am and 6.00pm.

The bowel screening centre staff will manage the call/recall process, testing ofFOBt kits and dispatch of test results. The centre will be responsible forarranging SSP appointments for individuals with positive FOBt results. The SSP will be responsible for guiding people with a positive result through the colonoscopy process until the time they are either returned to routine recallor diagnosed and referred to the MDT. BSW are responsible for participants until the point of cancer diagnosis. It is also responsible for those people withlarge and/or multiple adenomas, who will be invited to participate in thesurveillance programme. People on the surveillance programme will not berecalled for FOBt screening.

BSW is part ofScreening Services,Velindre NHS Trust.

There will be a phasedimplementation of theprogramme in Wales

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8 | Health Professional Information

The Screening ProcessInvitations and test kits will be sent to eligible people every 2 years. Peoplewith a positive FOBt result will receive a letter asking them to contact thecentral administration department. An appointment with the SSP will beoffered. This will be the participant’s first contact with a health professionalduring the screening process. The initial assessment will be offered as atelephone assessment. If a face to face consultation is requested by theparticipant or deemed necessary by the SSP following the telephoneassessment an appointment at the local assessment centre will be made. The assessment interview includes an explanation of the implications of theresult and a discussion about the colonoscopy procedure including risks. Anassessment of fitness for colonoscopy will be conducted, and an appointmentfor a colonoscopy offered if appropriate and acceptable to the participant.Radiological investigations may be offered to individuals who are not fit forcolonoscopy. Arrangements for the supply and self administration of bowelpreparation will also be made at the initial assessment.

Colonoscopy will be undertaken by Screening Colonoscopists in localassessment centres in Wales. If nothing abnormal is detected on colonoscopypeople will be invited for screening again in 2 years time. People found to havecancer will be referred to the multi disciplinary team. If polyps are found andremoved participants will be offered surveillance depending on the classificationof polyp according to BSG guidelines.

The Screening TestThe faecal occult blood test (FOBt)Individuals will be sent a Guaiac FOBt kit (gFOBt), which is to be completed athome. The kit comes with an information leaflet, cardboard sticks with which tocollect the samples from bowel motions and a “Freepost” envelope in which toreturn the kit for analysis at the screening laboratory.

There are three flaps on the test kit, each with two ‘windows’ underneath. Two tiny samples are taken from a bowel motion and spread onto each of thetwo windows under the first flap using the cardboard sticks provided. The flapis then sealed, and the process is repeated for the second and third bowelmotions (using the windows under the second and third flaps respectively).Each sample is to be collected on three consecutive but separate days. Once all six windows have been smeared, the kit should be returned to thelaboratory for analysis. The kit must be returned within 14 days of the firstsample being taken to ensure that a reliable result can be obtained.

Faecal occult blood test uptake (from English and Scottish data)Over 1 million people have now been invited to take part in the Englishprogramme. Most recent results (March 2008) from the screening programmein England show the uptake of FOBt screening is approximately 52%. There ishowever considerable regional variation in uptake – currently between 27%and 61%. Younger women demonstrate an increased uptake when comparedto men. As women get older their uptake decreases while men are more likelyto comply as they get older.

Positive rates of FOBt in England demonstrate a North-South divide in Englandwhich is not concordant with bowel cancer rates.

BSW is responsible up to the point ofdiagnosis and for people on the polypsurveillance programme

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Test resultsParticipants will receive a letter giving them the results of their test within twoweeks of the gFOBt kit being received for analysis at the laboratory. Thepossible results of gFOB tests are shown in table 4.

Individuals who receive an unclear result following their first FOBt are sent adifferent test kit called the immunochemical test (FIT) kit. Immunochemical tests(iFOBT) are specific to human haemoglobin and have lower false positive rates.They are newer tests and are more expensive than the gFOBt.

A two-tier reflex follow-up of equivocal FOBt results with an immunochemicaltest before colonoscopy has been demonstrated to be an efficient and effectiveapproach. (Figure 1 illustrates possible test results).

Wales will use animmuno-chemical testkit for unclear results on a guaiac FOBt –following the Scottishmodel.

This 2 tier testing modelwill result in fewercolonoscopies beingoffered

Result Explanation

Negative No detection of blood

Unclear 1-4 windows show blood

Positive 5-6 windows show blood

Table 4: FOBt Results

Guaiac FOBt

Positive Equivocal Negative

Positive Equivocal Negative

Refer to SSP

FIT kit sent Recall 2 yrs for FOBt

Refer to SSP Refer to SSP Recall 2 yrs FOBt

Figure 1: Possible FOBt results

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10 | Health Professional Information

The sensitivity of FOBt, i.e. the proportion of individuals who have bowelcancer that test positive, has been reported to be 55.0-92.2% in RCTs. A direct comparison of gFOBT and iFOBT in over 10,000 participants in ascreening programme showed that at a positivity threshold of 75 ng Hb/mlthe iFOBT was more sensitive. For the detection of advanced neoplasia(colorectal cancer, adenoma >10 mm or high grade dysplasia) the ratio ofsensitivities (iFOBT/gFOBT) was 1.90 (95% CI 1.41 – 2.56) and the ratio offalse positive rates 0.67 (0.53 – 0.86) (Guittet L et al 2007). At this thresholdthe positivity rate (2.4%) was the same as the gFOBT. Fraser et al concludedthat the two-tier approach to be used in Wales reduced the number of falsepositives and thus the number of colonoscopies required by about 30%compared with repeat gFOBT (Fraser 2007).

Diet and the faecal occult blood testIt has been suggested that certain foods, for example red meat and somevegetables, may react with the FOBt and increase the rate of false positiveresults if the tests are rehydrated (by adding distilled water to the test atanalysis). Data from RCTs using unrehydrated test kits have demonstrated nosignificant effect of dietary restriction on positivity rates, but that more severedietary restrictions may decrease participation. Dietary restrictions are notrequired for people undergoing the FOBt in the welsh bowel screeningprogramme, which uses unrehydrated tests.

Diagnostic TestingThe colonoscopy procedureIndividuals undergoing colonoscopy will routinely receive their bowel preparationby post following discussion with the SSP. They will also receive an informationbooklet about colonoscopy with a consent form. Following assessment the SSPwill offer an appointment for colonoscopy within 2 weeks in the Trust. Theprocedure will be carried out by a BSW approved screening colonoscopist.

Screening colonoscopists need to satisfy strict eligibility criteria prior to undergoinga three phase assessment and approval process. Audit data is submitted andscrutinized annually, both for screening colonoscopists and the units they work in(e.g. decontamination audits and risk assessments are carried out by BSW).

Colonoscopy uptake For every 1000 participants returning a test kit approximately 20 (2%) will be offered a colonoscopy and 18 (90%) will attend for colonoscopy. Theappropriateness of colonoscopy in relation to an individual’s risk will beassessed by the screening practitioner who may refer to the leadcolonoscopist at the local assessment centre for advice.

It is anticipated that the number of people that will not be suitable forcolonoscopy will vary between 1% and 11%.

Colonoscopy resultsThe cancer detection rate is expected to be approximately 10% of peoplewith positive FOBt results. The polyp detection rate is higher, up to 60% in someareas. There is an additional large proportion of non neoplastic findings, such as diverticular disease, colitis etc

Screening test kits do not need to berehydrated and therefore dietaryrestriction is not needed.

Colonoscopy is carriedout by BSW approvedcolonoscopists.

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Accuracy of colonoscopyThe sensitivity of colonoscopy i.e. the proportion of abnormalities that aredetected by colonoscopy, is thought to be greater than 90%. In a smallpercentage of participants it does not prove possible to perform a completecolonoscopy: In such a situation the colonoscopist will offer a repeatcolonoscopy or alternative radiological investigations.

Complications of colonoscopyComplications are rare but may include heavy bleeding caused by tissue or polyp removal (about a 1 in 150 risk), perforation (1 in 1,000) or death(about 1 in 10,000). Complications are more common as a result ofpolypectomy.

This small risk has to be set into context with the benefit of a 15% reduction in bowel cancer related deaths expected from the programme.

Polyp managementPolyps found during the colonoscopy procedure will normally be removed. If a biopsy is taken, participants will be informed immediately after the procedure.This is confirmed at the time of the test both verbally and in writing and anappointment for one week to discuss the result with the SSP is made. If theresult confirms a benign biopsy, participants will be contacted and given theoption of cancelling their appointment. They will be recalled for surveillancecolonoscopy depending on the classification of polyp. Polyps are classified aslow risk, intermediate risk or high risk according to BSG guidelines. The intensityof the follow up reflects the assessed risk in each case as illustrated in figure 2.

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The central administration department will co ordinate the surveillanceprogramme as per British Society of Gastroenterology guidance.

Screen Detected CancerIf bowel cancer is detected at colonoscopy (or via other further investigations),the care of the participant will be handed over to the local colorectalmultidisciplinary team (MDT).

Following consultation by the MDT and discussion with the participant, anindividual programme of treatment and care will be agreed. Around 8 in 10people who have bowel cancer detected will be offered surgery to remove the cancer. Research shows that after surgery over 50% of people presenting via the symptomatic service will live for more than five years depending on the stage at diagnosis. On average a higher proportion of those detected byscreening would be expected to survive 5 years. Pre or postoperativechemotherapy or radiotherapy may also be offered to patients.

Colonoscopy undertaken

PolypNothing abnormal detected

Cancer Other pathology

FOBt offered in 2 years

Refer to MDT

Refer to relevant specialist

Low Risk: 1 or 2 small (<1cm) adenomas

Intermediate Risk: 3 or 4 adenomas OR at least 1 >= 1cm

High Risk: >= 5 adenomas OR >= 3 adenomas of which at least 1 is >=1cm

FOBt offered in two years if within eligible age range

Three yearly colonoscopy surveillance until two negative examinations if within eligible age range

Colonoscopy 1 year, usually followed by colonoscopy at 3 years until two negative examinations as per BSG guidelines

Figure 2: Summary of colonoscopy outcomes, please see BSW pathways (appendix 1)

for further details

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Predicted outcomes of bowel cancer screening in WalesExact prediction is difficult to quantify although modelling figures from theEnglish and Scottish programmes has enabled the following estimations.

(Based on an uptake rate of 90% for colonoscopy.)

For every 1000 individuals who complete the FOBt

Around 20 have a positive FOBt result and are offered colonoscopy

Around 18 undergo the colonoscopy procedure*

Around 8 have no abnormality

Around 8 have polyps detected at colonoscopy

Around 2 have bowel cancer detected at colonoscopy

Workload predicted onavailable data

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The Role of the Specialist Screening Practitioner (SSP)

To provide the highest standard of care for participants of the bowel screeningprogramme a new role has been developed for health care professionals. TheSpecialist Screening Practitioner will be the first point of contact for participantswith a positive FOBt and will guide them through the screening journey. This willinclude making an assessment of fitness for colonoscopy (using an agreednational proforma), supporting participants by attending the colonoscopyappointment, managing the results handling process and referral to the multidisciplinary team if appropriate. They will work autonomously across the localTrust and in close collaboration with the Welsh Bowel Screening Centre toprovide a coordinated and seamless screening service.

Additional training will be given to ensure a high level of specialist knowledgeand skills to ensure a quality service is delivered and the participants supportedappropriately whatever their screening outcome.

SSPs will work closely with Screening Colonoscopists and refer to the LeadScreening Colonoscopist if a second opinion is required or a person deemedunfit for colonoscopy. SSPs will refer people to the MDT when appropriate inconjunction with the Lead Screening Colonoscopist.

Referral to specialist colleagues for benign disease will follow establishedpathways and the SSP will ensure this is done appropriately and promptly.

The role of the GP

The intention of the screening programme is to keep the primary care workloadto a minimum. However the screening programme has a responsibility todisseminate information about the programme, and once screening has begun,some people receiving invitations and test kits may want the opportunity todiscuss the screening process with their GP. Clarification of an individual’sprevious health or investigations may necessitate their GP’s involvement. A retrospective survey and prospective audit of general practice staff followingthe screening pilot demonstrated a ‘discernible, albeit modest,’ impact on primary care workload. Of particular relevance were increases in paperwork,administration and information provision to patients. (Jepson 2005)

Paperless communication of results is unlikely in the early stages of theprogramme but is anticipated in the near future.

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Programme Evaluation

In screening, evaluation refers to measuring the effect of the programme as a population based service on its cohort. Evaluation measures the screeningprogrammes effect on incidence and mortality and the sensitivity and specificityof the test. Initially the screening programme will appear to increase incidence ofbowel cancer as more cancers wil be detected, but over time it mustdemonstrate that it is reducing incidence and mortality rates amongst thetarget population.

Bowel Screening Wales, in collaboration with the Welsh Cancer Intelligence and Surveillance Unit (WCISU) evaluates the programme by recording andanalysing bowel cancer incidence in the eligible population, assigningscreening categories and identifying interval cancers.

In addition, evaluation should ensure that the positive predictive value of thescreening test is appropriate, that screen-detected cancers are diagnosed atan earlier stage than symptomatic cancers and that the number of intervalcancers diagnosed is minimised to demonstrate that the screening test is ofsufficient sensitivity.

Public InformationWritten information is available to the public and will be posted to participants atthe following times:

Written information has been translated into many other languages and isavailable on DVD and on the BSW website.

Leaflet Use

Understanding Bowel Screening in Wales General promotion

Bowel Screening Explained Sent with initial screening kit

Unclear Results For participants with equivocal FOBt tests

Further Investigations Sent if a positive result is found

Colonoscopy Following telephone assessment with SSP and acceptance of colonoscopy offer

Information Following a Colonoscopy (your results 1, 2 & 3)

Post colonoscopy to explain procedureand surveillance programme

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Hard to Reach Groups

The eligible population to be invited for bowel screening is identified fromthose fully registered with a General Practitioner (GP). However, some groupsof the eligible population are at risk of being missed. This is because they maynot be registered with a GP or they may not be at their registered address. Toensure that the programme is equitable, other methods need to be in place toidentify and invite these people. The groups identified include prisoners;homeless people and rough sleepers; travellers and gypsy travellers; asylumseekers and refugees; patients in long-stay wards or hospitals; residents ofcare homes; people serving with armed forces and residents in Wales who aretemporarily registered with their GP.

It is important to reach these populations as some of them could be atincreased risk of bowel cancer for reasons such as poor diet or co-morbidity. It is also recognised that when an intervention is introduced to a populationthe difference between social economic groups can be increased; as those inhigher socioeconomic groups may have a good uptake of the interventionwhereas those in the lower socioeconomic groups may not.

A report has been drafted with the aim of identifying the ‘hard to reach’populations, exploring the barriers to taking part in bowel screening andmaking recommendations on how to manage bowel screening in thesepopulations. Adapted service models have been drawn up for the differentgroups. The evidence for this work has come from a review of relevantpublications and contact with service providers, strategic leads, informationproviders and the voluntary sector.

Further Information

Bowel Screening Wales would be very pleased to receive comments or suggestions on this information pack.

For further information and feedback please visit:http://www.bowelscreeningwales.org.uk

Telephone enquiries:Freephone Helpline 0800 294 3370This number is for general enquiries and guidance on issues related to thescreening process.

Freephone Appointments line 0800 294 3380This is specifically for appointment related issues including call and recall to the programme.

Postal correspondence to:The Welsh Bowel Screening CentreUnit 6Green MeadowLlantrisantCF72 8XT

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References

BSG. (2002) “Guidelines for Colorectal Cancer Screening in High Risk Groups”.

British Society of Gastroenterology.

Cancer Genetics Service for Wales, (2006). Referral Guidelines for an individual with a family history

of cancer. www.wales.nhs.uk/sites3/docmetadata.cfm?orgid=525&id=82208

Accessed August 2008

Cancer Research UK. 2006. “Cancer Statistics”.

http://info.cancerresearchuk.org/cancerstats/types/bowel/?a=5441. Accessed August 2008

CSCG, May 2008. “A Bowel Cancer Framework for Wales”.

Cancer Services Coordinating Group. Wales.

Fraser, C.et al., (2007) “Evaluation of a card collection based faecal immunochemical test in

screening for colorectal cancer using a two-tier reflex approach”. GUT 56;1415-8

Guittet, L. Et al., (2007) “Comparison of a guaiac-based and an immunochemical faecal occult

blood test in screening for colorectal cancer in a general average-risk population”.

GUT. 56:210-214

Hardcastle JD, Chamberlain JO, Robinson MHE et al. (1996). Randomised controlled trial

of faecal-occult-blood screening for colorectal cancer. The Lancet 348:1472 – 77.

Hewitson P, Glasziou P, Irwig L, Towler B, Watson E (2007). Screening for colorectal cancer

using the faecal occult blood test, Hemoccult. Cochrane Database of Systematic Reviews 2007,

Issue 1. Art. No.: CD001216. DOI: 10.1002/14651858.CD001216.pub2.

Jepson, R. et al, (2005). “Impact of UK Colorectal Cancer Screening Pilot on primary care”.

British Journal of General Practitioner. 1; 55(510): 20–25

Kronborg, O., et al.(1996). Randomised study of screening for colorectal cancer with

faecal-occult-blood test. The Lancet 348(9040): p. 1467-71.

Mandel, J.S., et al. (1993), Reducing mortality from colorectal cancer by screening for faecal

occult blood. Minnesota Colon Cancer Control Study. New England Journal of Medicine.

328(19): p. 1365-71

National Screening Committee, (2003). “Criteria for appraising the viability, effectiveness and

appropriateness of a screening programme”. Available from UK Screening Committee at

www.nsc.nhs.uk/pdfs/criteria.pdf. Accessed August 2008

NICE,(2005). Referral Guidelines for Suspected Cancer in Adults and Children.

National Institute for Clinical Excellence.

The UK CRC Screening Pilot Evaluation Team (2003). Evaluation of the UK colorectal Cancer

Screening Pilot. Final Report. Available at www.cancerscreening.nhs.uk/bowel/finalreport.pdf.

Accessed August 2008

Rembraken BJ. (1997). Flat and Depressed Colorectal neoplasia in England and Japan

(foundation for Promotion of Cancer, Japan and British Council).

Japanese Journal of Clinical Oncology 27:447

WCISU Annual Publication NoSA8/01, (2008). “Cancer Incidence in Wales 2002 - 2006”. Welsh

Cancer Intelligence and Surveillance Unit. Cardiff

White C, Wade R, Howe J, Steward J (2006). WCISU Occasional Report No. S06/01:

Projection of incidence and mortality for cancer of the large bowel to 2015.

Welsh Cancer Intelligence and Surveillance Unit: Cardiff.

Page 20: Bowel Screening Wales Health Professional Information · Genetic Conditions Familial adenomatous polyposis (FAP)accounts for around 1% of cases of bowel cancer. Patients develop hundreds

Pat

hway

1 I

nvita

tion

to S

cree

ning

and

Fae

cal O

ccul

t Blo

od T

est

Cal

l tar

get

popu

latio

n

Rec

all f

or F

OB

in

2 y

ears

fro

m d

ate

test

ret

urne

d

G.P

. and

part

icip

ant

info

rmed

Pos

itive

res

ult

Ref

erra

l

Ref

er to

P

athw

ay 2

Sec

ond

non

resp

onse

-

rem

inde

r le

tter

s un

til

next

scr

eeni

ng

invi

tatio

n

Equ

ivoc

al r

esul

t Fo

r 2

nd e

quiv

ocal

re

sult

trea

t as

posi

tive

IFO

B te

st

requ

ired

No

resp

onse

in

6 w

eeks

No

abno

rmal

ity

dete

cted

Test

kit

retu

rned

Imm

unoc

hem

ical

te

st k

it se

nt

Sen

d 1

st in

vita

tion

and

test

kit

Test

kit

not r

etur

ned

with

in 6

wee

ks.

Rem

inde

r se

nt a

nd

anot

her

test

kit.

No

resp

onse

in

6 w

eeks

Rec

all f

or F

OB

in

2 y

ears

fro

m

the

date

test

issu

ed

Appendix 1: Service Models

18 | Health Professional Information

Page 21: Bowel Screening Wales Health Professional Information · Genetic Conditions Familial adenomatous polyposis (FAP)accounts for around 1% of cases of bowel cancer. Patients develop hundreds

www.bowelscreeningwales.org.uk | 19

Pathway 2 Referral to Assessment

Positive FOB Test

Central Administration Department notified

Letter sent to participant - asked to contact CAD

No Call within 2 weeks, sent another letter asked to contact CAD

No Call within 3 weeks, sent face to face assessment appointment

Appointment for telephone assessment with SSP given

Unable to contact

Repeat phone call SSP Assessment – Telephone or clinic appointment

Fit for colonoscopy Not Fit for colonoscopy

Refer to Pathway 4Colonoscopy offered

Declined Accepted

DNA/decline

Series of letters to participant and G.P.

6 monthly letters to participant until 5 years and then 2 year recall to SSP and non responder loop G.P. informed and again at 6 and 48 months

No contact

SSP clinic appointment sent

DNA or Decline

6 monthly letters to participant until 5 years and then 2 year recall to SSP and non responder loop.

G.P. informed and again at 6 and 48 months

Colonoscopy appointment date and time agreed.

Refer to Pathway 3

Clinic appointment assessment

SSP face to face appointment sent

Results to GP Electronically (phase 2)

Contact made Details confirmed land line and second contact number recorded

Page 22: Bowel Screening Wales Health Professional Information · Genetic Conditions Familial adenomatous polyposis (FAP)accounts for around 1% of cases of bowel cancer. Patients develop hundreds

20 | Health Professional Information

Pat

hway

3 C

olon

osco

py

App

oint

men

t for

C

olon

osco

py g

iven

Neg

ativ

e O

ther

Pat

holo

gyC

ance

r su

spec

ted

Bio

psy

or p

olyp

re

mov

ed

Pat

holo

gy

Ben

ign

Can

cer

Con

firm

edC

ance

r E

xclu

ded

Ade

nom

a co

nfirm

edR

efer

to

Pat

hway

6

Ref

erra

l to

appr

opria

te

spec

ialty

R

efer

to M

DT

GP

& p

artic

ipan

t inf

orm

ed

Ref

er to

Clin

ical

Nur

se

Spe

cial

ist t

eam

as

per

loca

l pro

toco

l

Ref

erra

l to

appr

opria

te

spec

ialty

Ref

er to

ex

clus

ion

prot

ocol

Info

rm

Par

ticip

ant

& G

.P.

Info

rm

Par

ticip

ant

& G

.P.

Rec

all f

or

FOB

in 2

ye

ars

Col

onos

copy

un

dert

aken

Col

onos

copy

in

com

plet

e

Col

onos

copy

C

ompl

ete

R

efer

to

path

way

5

DN

AS

end

anot

her

appo

intm

ent

2nd

DN

A

GP

info

rmed

by s

erie

s of

lett

ers

Lett

er s

ent t

o pa

rtic

ipan

t ev

ery

6 m

onth

s fo

r 5

year

s th

en 2

yea

rly r

ecal

l to

SS

P

Page 23: Bowel Screening Wales Health Professional Information · Genetic Conditions Familial adenomatous polyposis (FAP)accounts for around 1% of cases of bowel cancer. Patients develop hundreds

www.bowelscreeningwales.org.uk | 21

Pat

hway

4 N

ot F

it fo

r C

olon

osco

py

Posi

tive

FOB

tN

ot fi

t for

col

onos

copy

6 m

onth

ly le

tters

to

part

icip

ant f

or 5

yea

rs

then

2 y

early

reca

ll to

SS

P

GP

info

rmed

and

aga

in

at 6

mon

ths

and

48

mon

ths

Dec

line

Com

plet

e

Neg

ativ

e

Inco

mpl

ete

Acc

ept

Sui

tabl

e fo

r rad

iolo

gica

l in

vest

igat

ions

CT

colo

nogr

aphy

or b

ariu

m e

nem

a of

fere

d ac

cord

ing

to lo

cal p

roto

col

CT

colo

nogr

aphy

or

Ba

enem

a un

dert

aken

Con

side

r rep

eat o

nce

only

2nd

inco

mpl

ete

proc

edur

eR

efer

to s

cree

ning

co

lono

scop

ist f

or

man

agem

ent d

ecis

ion

Par

ticip

ant

& G

P in

form

edR

ecal

l for

FO

Bt

in 2

yea

rs

Ref

er to

scr

eeni

ng c

olon

osco

pist

for m

anag

emen

t dec

isio

nIn

form

Par

ticip

ant &

G.P

.

GP

info

rmed

S

erie

s of

lette

rs to

par

ticip

ant

Sen

d an

othe

r ap

poin

tmen

t

Oth

er P

atho

logy

su

spec

ted

Ade

nom

asu

spec

ted

Can

cer

susp

ecte

d2nd

DN

A

DN

A

Not

sui

tabl

e fo

r ra

diol

ogic

al in

vest

igat

ions

Rad

iolo

gy a

ppoi

ntm

ent a

gree

d

Indi

vidu

al m

anag

emen

t pl

an a

gree

d

Ass

esse

d by

Scr

eeni

ng

Col

onos

copi

st

Page 24: Bowel Screening Wales Health Professional Information · Genetic Conditions Familial adenomatous polyposis (FAP)accounts for around 1% of cases of bowel cancer. Patients develop hundreds

Pat

hway

5 I

ncom

plet

e C

olon

osco

py

Col

onos

copy

und

erta

ken

2nd

inco

mpl

ete

Scr

eeni

ng c

olon

osco

pist

de

cide

s in

divi

dual

m

anag

emen

t pla

n

Not

sui

tabl

e fo

r rep

eat

colo

nosc

opy

Col

onos

copy

co

mpl

ete

C

olon

osco

py

Inco

mpl

ete

Rep

eat

colo

nosc

opy

cons

ider

ed

Ref

er to

P

athw

ay 3

Ref

er to

P

athw

ay 4

Sui

tabl

e fo

r rep

eat

colo

nosc

opy

Ref

er to

Pat

hway

3

22 | Health Professional Information

Page 25: Bowel Screening Wales Health Professional Information · Genetic Conditions Familial adenomatous polyposis (FAP)accounts for around 1% of cases of bowel cancer. Patients develop hundreds

Pat

hway

6 A

deno

ma

Sur

veill

ance

Scr

een

Det

ecte

d P

olyp

(s)

Rem

oved

- C

olon

Cle

ared

Col

onos

copy

Out

com

e

Low

Ris

kN

o su

rvei

llanc

eR

ecal

l FO

Bt 2

yea

rsG

P +

par

ticip

ant i

nfor

med

Inte

rmed

iate

risk

C

olon

osco

py 3

yea

rG

P +

par

ticip

ant

info

rmed

Hig

h ris

kC

olon

osco

py a

t 1 y

ear

GP

+ p

artic

ipan

t in

form

ed

Una

ble

to c

lear

pol

yps

at c

olon

osco

pyH

igh

risk

aden

omas

Low

or

Inte

rmed

iate

risk

Com

plet

ely

exci

sed

Rep

eat c

olon

osco

pyA

t 1 y

ear

Inco

mpl

etel

y ex

cise

d

Col

on c

lear

of p

olyp

s

Rep

eat c

olon

osco

py

or fl

exib

le

sigm

oido

scop

y w

ithin

3

mon

ths

– re

peat

ed

until

no

resi

dual

pol

yp

Rep

eat c

olon

osco

pyA

t 3 y

ears

Rep

eat c

olon

osco

py o

r fle

xibl

e si

gmoi

dosc

opy

with

in 3

mon

ths

– re

peat

ed u

ntil

no

resi

dual

pol

yp

No

aden

omas

, or

low

risk

In

term

edia

teris

k ad

enom

asC

arci

nom

a

Ref

er to

MD

T

Ref

er to

ex

clus

ion

crite

riaN

o ad

enom

as

or lo

w ri

sk

aden

omas

Rep

eat

colo

nosc

opy

at 3

yea

rs

Ret

urn

to

2 ye

arly

FO

BT

reca

ll

Rep

eat

colo

nosc

opy

at 3

yea

rs

www.bowelscreeningwales.org.uk | 23

Page 26: Bowel Screening Wales Health Professional Information · Genetic Conditions Familial adenomatous polyposis (FAP)accounts for around 1% of cases of bowel cancer. Patients develop hundreds

24 | Health Professional Information

Pathway 7 Referral to Multidisciplinary Teams

Colonoscopy

Refer to CNS team at time of colonoscopy

Histopathology

Obvious cancer Biopsy taken

Cancer confirmed

Manage according to local protocol as for symptomatic patients

Result to screening colonoscopistCopied to SSP

Discuss result- agree management

CancerRefer to MDT coordinator- assigned to a named consultant

Case presented to MDT by screening colonoscopist

SSP present

Local mechanism for discussion of difficult cases

Other PathologyRefer to relevant specialty

Presented to colorectal MDT by CNS team

SSP attends MDT meeting

SSP and screening colonoscopist informed

Other pathology

Polyp removed

Page 27: Bowel Screening Wales Health Professional Information · Genetic Conditions Familial adenomatous polyposis (FAP)accounts for around 1% of cases of bowel cancer. Patients develop hundreds
Page 28: Bowel Screening Wales Health Professional Information · Genetic Conditions Familial adenomatous polyposis (FAP)accounts for around 1% of cases of bowel cancer. Patients develop hundreds