Health Professional Information

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1 Bowel Screening Wales Health Professional Information Version 2.0

2 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.

3 Contents Bowel Cancer 2 Background information 2 Risk factors 3 Natural disease progression 3 Symptoms and signs 3 Genetic conditions 4 Screening 5 Bowel Cancer Screening 6 Bowel Screening in Wales 7 The screening process 8 The screening test 8 Diagnostic testing 10 The Role of the Specialist Screening Practitioner 14 The Role of the Regional Nurse 14 The Role of the General Practitioner 14 Programme Evaluation 15 Hard to Reach Groups 16 Further Information 16 References 17 Appendix 1- Service Models 18 Tables Table 1: Incidence and Mortality Rates 2 Table 2: Survival Rates 2 Table 3: Stage at Detection 6 Table 4: FOBt Results 9 Figures Figure 1: Possible FOBt results 9 Figure 2: Summary of colonoscopy outcomes 12 Figure 3: Predicted outcomes of bowel cancer screening in Wales

4 Bowel Cancer Background Information Incidence and Mortality Colorectal cancer is the third most common cancer in women and men in Wales with over 2000 new cases diagnosed each year. It is the second most common cause of cancer death in men and third in women, with approximately 1000 deaths per year (Cancer Services Co-ordinating Group [CSCG], 2008). Bowel cancer is more common on the left side of the colon than the right, with approximately 63% of cases occurring in the colon, 29% in the rectum and 8% in the rectosigmoid junction. The lifetime risk of being diagnosed with bowel cancer is around 1 in 20 for women and 1 in 18 for men. Table 1 Colorectal cancer: Age standardised incidence and mortality by sex and country, , United Kingdom (Office for National Statistics, 2010). Colorectal cancer is the 3rd most common cancer in Wales The lifetime risk of developing bowel cancer is: 1:20 for women 1:18 for men Table 1: Incidence and Mortality Rates Incidence males females Mortality males females Rate¹ per 100,000 population Rate¹ per 100,000 population England Wales Scotland N Ireland 1. Directly age-standardised using the European standard population. 2. Rates are calculated as three-year averages. 0 England Wales Scotland N Ireland Survival rates Table 2 illustrates the five year survival rates according to the Dukes stage classification (Cancer Research UK, 2010). Table 2: Survival Rates Dukes stage Five year overall survival A 93.2% B 77% C 47.7% D 6.6% 2 Health Professional Information

5 Risk Factors Although the cause of bowel cancer is not fully understood, possible risk factors have been identified: Age/sex The development of bowel cancer is strongly associated with age. More than 80% of cases occur in those aged 60 and over. Men and women have a similar risk of developing bowel cancer up to age 40, but after 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 genetically linked. Individuals with either one first-degree relative diagnosed with bowel cancer before the age of 45 or two first-degree relatives diagnosed at any age 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 years of age increases the lifetime risk but not enough to justify regular screening colonoscopy. Having one first-degree relative diagnosed with bowel cancer at or over 65 years of age leads to only a slightly increased lifetime risk of developing bowel cancer. Risk Factors Include: Increasing Age Poor Diet Family History. Natural Disease Progression Over 90% of bowel cancer cases are adenocarcinomas, and of these, most arise from adenomatous polyps. Adenomatous polyps increase in prevalence with age, 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. The development of a polyp into a cancer can take more than 10 years, with larger size, villous histology and severe dysplasia being important predictors of progression to invasive cancer. Adenomas that are flat or depressed account for 10% of cases. These are characteristically harder to detect and may carry a higher risk of malignancy. 90% of bowel cancers arise from adenomatous polyps Symptoms and signs Rectal bleeding, a change in bowel habit and anaemia are the most common presenting symptoms of bowel cancer. Nausea, weight loss, abdominal pain and anorexia may be experienced in more advanced disease. While individual symptoms may be poor predictors of bowel cancer, the presence of a combination of signs and symptoms is more sensitive and specific. Symptoms of bowel cancer include: Change of bowel habit Nausea Weight loss Pain Anorexia 3

6 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 weeks or more. Current NICE Referral guidelines for symptomatic patients (2005) Aged >60 years who report rectal bleeding persisting for six weeks or more without a change in bowel habit and without anal symptoms. Aged >60 years who report a change in bowel habit to looser stools and/or more 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 pelvic mass 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 anaemia and a haemoglobin level of < 10 g/100 ml. Please note: Bowel screening is a service for asymptomatic individuals. It is not the appropriate investigation for individuals with symptoms. A negative screening test result in a symptomatic person can give false reassurance and lead to avoidable delay in diagnosis. Genetic Conditions Familial adenomatous polyposis (FAP) accounts for around 1% of cases of bowel cancer. Patients develop hundreds or thousands of polyps in the colon and rectum in their twenties and thirties, and have almost a 100% chance of developing 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 for around 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 younger age groups and is the cause of around 40% of cases in individuals under 30 years of age. There may be other non-colorectal associated sites affected with the syndrome e.g. endometrium, ovary, stomach, pancreato-biliary system and urinary tract. The original definition of HNPCC has been modified to encompass the excess risk of endometrial cancer. 4 Health Professional Information

7 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 (one affected 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 these criteria is not an absolute requirement for classification as HNPCC, as colorectal cancer sufferers have been identified as gene carriers despite having fewer affected relatives than outlined above. Enhanced surveillance by colonoscopy is advisable for people with a significant family history whereas routine FOBt screening is more appropriate for the general population. Refer to All Wales Genetics service if significant family history Patients with a significant family history of 2 first degree relatives with bowel cancer or 1 first degree relative under the age of 45 years will be advised to attend their GP practice for referral to the Medical Genetics Service (Cancer Genetics Service for Wales, 2011). Screening Screening is a process of identifying apparently healthy people who may be at increased risk of a disease or condition. They can then be offered information, further tests and appropriate treatment to reduce their risk and/or any complications arising from the disease or condition (National Screening Committee [NSC], 2011). 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 5

8 Bowel Cancer Screening Research Evidence Four 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 (Mandel et al, 1993; Hardcastle et al, 1996; Kronborg et al, 1996; Kewenter et al, 1994). These trials demonstrated a reduction in bowel cancer specific mortality in the screened groups, using biennial screening, annual screening or a combination of the two and with follow up periods ranging from 11 to 18 years. A meta-analysis of these four trials (Towler et al, 1998) reported a 16% reduction in bowel cancer specific mortality with screening. RCT s demonstrated mortality from bowel cancer can be reduced by biennial FOBt screening UK Pilot Programme Following these demonstrations of mortality reduction, the Department of Health commissioned a pilot screening programme to assess the feasibility of using biennial FOBt screening as a population based screening tool for bowel cancer in the UK. Three pilot screening rounds for men and women aged years were successfully implemented in Coventry and Warwickshire in England and in Tayside, Grampian and Fife in Scotland. The first round of screening demonstrated that screening for bowel cancer using the FOBt is feasible within the context of the NHS (UK CRC Screening Pilot Evaluation Team, 2003). A pilot to assess the feasibility of a biennial FOBt programme was set up Table 3 shows the proportion of cancers detected by screening for each Dukes stage during the first phase of the screening pilot in England. Table 3: Stage at Detection 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% Survival rates are improved if diagnosed at an early stage The English and Scottish bowel screening programmes have been developed based on the findings of the pilot. Both programmes use biennial FOBt home kits followed by colonoscopy if the test is positive. 6 Health Professional Information

9 Bowel Screening in Wales Bowel Screening Wales (BSW) is managed by the Screening Division of Public Health Wales. The Welsh Bowel Screening Centre is situated at Unit 6, Green Meadow, Llantrisant, CF72 8XT and houses the central administration department and national screening laboratory. All Health Boards in Wales participate in the programme by providing Specialist Screening Practitioner (SSP) assessment and follow-up, together with endoscopic and radiological investigations. Initially, people aged between 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 those aged 70-74, and finally those aged years) until screening is offered to all eligible people aged throughout Wales. Self Referral into the programme by requesting a testing kit will not be possible until this stage is reached. BSW is part of Screening Division Public Health Wales There will be a phased implementation of the programme in Wales Completed test kits are returned to the laboratory for testing. Administrative staff co-ordinate the call/recall system for eligible people; ensuring participants with a positive result are referred for further assessment to Specialist Screening Practitioners (SSP) at each Local Assessment Centre. Administrative staff man a national telephone helpline for public and professional information. The helpline number is The bowel screening centre staff manage the call/recall process, testing of FOBt kits and dispatch of test results. The centre is responsible for arranging SSP appointments for individuals with positive FOBt results. The SSP is responsible for guiding people with a positive result through the colonoscopy process until the time they are either returned to routine recall or diagnosed and referred to the MDT. BSW are responsible for participants until the point of cancer diagnosis. It is also responsible for those people with large and/or multiple adenomas, who will be invited to participate in the surveillance programme. People on the surveillance programme will not be recalled for FOBt screening until they have completed surveillance. 7

10 The Screening Process Invitations and test kits are routinely sent to eligible people every 2 years. People with a positive FOBt result receive a letter asking them to contact the central administration department. An appointment with the SSP is offered. This is the participant s first contact with a health professional during the screening process. The initial assessment will be offered as a telephone assessment. If a face to face consultation is requested by the participant or deemed necessary by the SSP following the telephone assessment an appointment at the Local Assessment Centre will be made. The assessment interview includes an explanation of the implications of the result and a discussion about the colonoscopy procedure including risks. An assessment of fitness for colonoscopy will be conducted, and an appointment for a colonoscopy offered if appropriate and acceptable to the participant. Radiological investigations may be offered to individuals who are not fit for colonoscopy. Arrangements for the supply and self administration of bowel preparation will also be made at the initial assessment. Colonoscopy will be undertaken by Screening Colonoscopists in Local Assessment Centres in Wales. If no abnormality is detected on colonoscopy people will be invited for screening again in 2 years time. People found to have cancer will be referred to the multi disciplinary team. If polyps are found and removed participants will be offered surveillance depending on the classification of polyp according to BSG guidelines (Atkins & Saunders, 2002). BSW is responsible up to the point of diagnosis and for people on the polyp surveillance programme The Screening Test The faecal occult blood test (FOBt) Individuals will be sent a Guaiac FOBt kit (gfobt), which is to be completed at home. The kit comes with an information leaflet, cardboard sticks with which to collect the samples from bowel motions and a Freepost envelope in which to return 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 the two windows under the first flap using the cardboard sticks provided. The flap is then sealed, and the process is repeated for the second and third bowel motions (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 the laboratory for analysis. The kit must be returned within 14 days of the first sample being taken to ensure that a reliable result can be obtained. Faecal occult blood test uptake Over 1 million people have now been invited to take part in the English programme. Most recent results from the screening programme in England show the uptake of FOBt screening is approximately 52%. There is however considerable regional variation in uptake between 27% and 61%. Younger women demonstrate an increased uptake when compared to men. As women get older their uptake decreases while men are more likely to comply as they get older. Positive rates of FOBt in England demonstrate a North-South divide in England which is not concordant with bowel cancer rates. In Wales uptake is currently 56% (March, 2011). 8 Health Professional Information

11 Test results Participants will receive a letter giving them the results of their test within two weeks of the gfobt kit being received for analysis at the laboratory. The possible results of gfob tests are shown in table 4. Table 4: FOBt Results Result Explanation Negative Unclear Positive No detection of blood 1-4 windows show blood 5-6 windows show blood Individuals who receive an unclear result following their first FOBt are sent a different 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 immunochemical test before colonoscopy has been demonstrated to be an efficient and effective approach. (Figure 1 illustrates possible test results). Wales will use an immuno-chemical test kit for unclear results on a guaiac FOBt following the Scottish model Figure 1: Possible FOBt results Guaiac FOBt Positive Equivocal Negative Refer to SSP FIT kit sent Recall 2 yrs for FOBt Positive Negative Refer to SSP Recall 2 yrs FOBt 9

12 The sensitivity of FOBt, i.e. the proportion of individuals who have bowel cancer that test positive, has been reported to be % in RCTs. A direct comparison of gfobt and ifobt in over 10,000 participants in a screening programme showed that at a positivity threshold of 75 ng Hb/ml the ifobt was more sensitive. For the detection of advanced neoplasia (colorectal cancer, adenoma >10 mm or high grade dysplasia) the ratio of sensitivities (ifobt/gfobt) was 1.90 (95% CI ) and the ratio of false positive rates 0.67 ( ) (Guittet et al, 2007). At this threshold the positivity rate (2.4%) was the same as the gfobt. Fraser et al (2007) concluded that the two-tier approach to be used in Wales reduced the number of false positives and thus the number of colonoscopies required by about 30% compared with repeat gfobt. Diet and the faecal occult blood test It has been suggested that certain foods, for example red meat and some vegetables, may react with the FOBt and increase the rate of false positive results if the tests are rehydrated (by adding distilled water to the test at analysis). Data from RCTs using unrehydrated test kits have demonstrated no significant effect of dietary restriction on positivity rates, but that more severe dietary restrictions may decrease participation. Dietary restrictions are not required for people undergoing the FOBt in the welsh bowel screening programme, which uses unrehydrated tests. Screening test kits do not need to be rehydrated and therefore dietary restriction is not needed Diagnostic Testing The colonoscopy procedure Individuals undergoing colonoscopy will receive their bowel preparation by post following discussion with the SSP. They will also receive an information booklet about colonoscopy with a consent form. Following assessment the SSP will offer an appointment for colonoscopy within 2 weeks in the Local Assessment Centre. The procedure will be carried out by a BSW approved screening colonoscopist. Screening colonoscopists need to satisfy strict eligibility criteria prior to undergoing a three phase assessment and approval process. Audit data is submitted and scrutinized 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. The appropriateness of colonoscopy in relation to an individual s risk will be assessed by the screening practitioner who may refer to the lead colonoscopist at the local assessment centre for advice. It is anticipated that the number of people that will not be suitable for colonoscopy will vary between 1% and 11%. Colonoscopy results The cancer detection rate is expected to be approximately 10% of people with positive FOBt results. The polyp detection rate is higher, up to 60% in some areas. There is an additional large proportion of non neoplastic findings, such as diverticular disease, colitis etc Colonoscopy is carried out by BSW approved colonoscopists 10 Health Professional Information

13 Accuracy of colonoscopy The sensitivity of colonoscopy i.e. the proportion of abnormalities that are detected by colonoscopy, is thought to be greater than 90%. In a small percentage of participants it does not prove possible to perform a complete colonoscopy: In such a situation the colonoscopist will offer a repeat colonoscopy or alternative radiological investigations. Complications of colonoscopy Complications 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 of polypectomy. 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 management Polyps 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 an appointment is made for one week to discuss the result with the SSP. If the result confirms a benign biopsy, participants will be contacted and given the option of cancelling their appointment. They will be recalled for surveillance colonoscopy depending on the classification of polyp. Polyps are classified as low risk, intermediate risk or high risk according to BSG guidelines (Atkins & Saunders, 2002). The intensity of the follow up reflects the assessed risk in each case as illustrated in figure

14 Figure 2: Summary of colonoscopy outcomes, please see BSW pathways (appendix 1) for further details Colonoscopy undertaken No abnormality detected Polyp 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 The central administration department will co ordinate the surveillance programme as per British Society of Gastroenterology guidance. Screen Detected Cancer If bowel cancer is detected at colonoscopy (or via other further investigations), the care of the participant will be handed over to the local colorectal multidisciplinary team (MDT). Following consultation by the MDT and discussion with the participant, an individual programme of treatment and care will be agreed. Around 8 in 10 people 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 by screening would be expected to survive 5 years. Pre or postoperative chemotherapy or radiotherapy may also be offered to patients. 12 Health Professional Information

15 Figure 3: Predicted outcomes of bowel cancer screening in Wales Exact prediction is difficult to quantify although modelling figures from the English and Scottish programmes has enabled the following estimations. For every 1000 individuals who complete the FOBt Around 20 have a positive FOBt result and are offered colonoscopy Workload predicted on available data 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 (Based on an uptake rate of 90% for colonoscopy.) 13

16 The Role of the Specialist Screening Practitioner (SSP) To provide the highest standard of care for participants of the bowel screening programme a new role has been developed for health care professionals. The Specialist Screening Practitioner is the first point of contact for participants with a positive FOBt and will guide them through the screening journey. This will include making an assessment of fitness for colonoscopy (using an agreed national proforma), supporting participants by attending the colonoscopy appointment, managing the results handling process and referral to the multi disciplinary team if appropriate. They will work autonomously across the Local Assessment Centre and in close collaboration with the Welsh Bowel Screening Centre to provide a coordinated and seamless screening service. Additional training is given to ensure a high level of specialist knowledge and skills to ensure a quality service is delivered and the participants supported appropriately whatever their screening outcome. SSPs will work closely with Screening Colonoscopists and refer to the Lead Screening Colonoscopist if a second opinion is required or a person deemed unfit for colonoscopy. SSPs will refer people to the MDT when appropriate in conjunction with the Lead Screening Colonoscopist. Referral to specialist colleagues for benign disease will follow established pathways and the SSP will ensure this is done appropriately and promptly. The Role of the Regional Nurse There are three Regional Nurses to support and monitor the Bowel Screening Programme within an allocated region. They ensure BSW policies, standards and protocols are adhered to while supporting SSPs and offering professional support to local teams. The Role of the GP The intention of the screening programme is to keep the primary care workload to a minimum. However the screening programme has a responsibility to disseminate information about the programme, and once screening has begun, some people receiving invitations and test kits may want the opportunity to discuss the screening process with their GP. Clarification of an individual s previous health or investigations may necessitate their GP s involvement. A retrospective survey and prospective audit of general practice staff following the 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 the programme but is anticipated in the near future. 14 Health Professional Information

17 Programme Evaluation In screening, evaluation refers to measuring the effect of the programme as a population based service on its cohort. Evaluation measures the screening programmes effect on incidence and mortality and the sensitivity and specificity of the test. Initially the screening programme will appear to increase incidence of bowel cancer as more cancers wil be detected, but over time it must demonstrate that it is reducing incidence and mortality rates amongst the target population. Bowel Screening Wales, in collaboration with the Welsh Cancer Intelligence and Surveillance Unit (WCISU) evaluates the programme by recording and analysing bowel cancer incidence in the eligible population, assigning screening categories and identifying interval cancers. (White et al, 2006; WCISU, 2008). In addition, evaluation should ensure that the positive predictive value of the screening test is appropriate, that screen-detected cancers are diagnosed at an earlier stage than symptomatic cancers and that the number of interval cancers diagnosed is minimised to demonstrate that the screening test is of sufficient sensitivity. Public Information Written information is available to the public and will be posted to participants at the following times: Leaflet Understanding Bowel Screening in Wales Bowel Screening Explained Unclear Results Further Investigations Colonoscopy Information Following a Colonoscopy (your results 1, 2 & 3) Flexible Sigmoidoscopy CT Colonogram Use General promotion Sent with initial screening kit For participants with equivocal FOBt tests Sent if a positive result is found Following telephone assessment with SSP and acceptance of colonoscopy offer Post colonoscopy to explain procedure and surveillance programme Post colonoscopy if flexible sigmoidoscopy needed If unfit for colonoscopy or colonoscopy incomplete Written information has been translated into many other languages and is available on DVD and on the BSW website. Braille information is available on request. 15

18 Hard to Reach Groups The eligible population to be invited for bowel screening is identified from those fully registered with a General Practitioner (GP). However, some groups of the eligible population are at risk of being missed. This is because they may not be registered with a GP or they may not be at their registered address. To ensure that the programme is equitable, other methods need to be in place to identify and invite these people. The groups identified include prisoners; homeless people and rough sleepers; travellers and gypsy travellers; asylum seekers and refugees; patients in long-stay wards or hospitals; residents of care homes; people serving with armed forces and residents in Wales who are temporarily registered with their GP. It is important to reach these populations as some of them could be at increased 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 population the difference between social economic groups can be increased; as those in higher socioeconomic groups may have a good uptake of the intervention whereas 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 and making recommendations on how to manage bowel screening in these populations. Adapted service models have been drawn up for the different groups. The evidence for this work has come from a review of relevant publications and contact with service providers, strategic leads, information providers 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: Telephone enquiries: Freephone Helpline This number is for general enquiries and guidance on issues related to the screening process. Freephone Appointments line This is specifically for appointment related issues including call and recall to the programme. Postal correspondence to: The Welsh Bowel Screening Centre Unit 6 Green Meadow Llantrisant CF72 8XT 16 Health Professional Information

19 References Atkins WS, Saunders BP (2002) Surveillance guidelines after removal of colorectal adenomatous polyps; GUT; Vol 51 (Suppl V) v6 - v9 Cancer Genetics Service for Wales (2011) Referral Guidelines for Individuals with a Family History of Cancer; accessed 30/3/2011 Cancer Research UK (2010) Bowel Cancer Survival Statistics: info.cancerresearchuk.org/cancerstats/types/bowel/survival/#stage;accessed 8/3/2011 Cancer Services Co-ordinating Group, May 2008 A Bowel Cancer Framework for Wales; Cancer Services Co-ordinating Group; Wales. Fraser CG, Mathew CM, Ashley N, Mowat G, Wilson JA, Carey FA, Steele RJC (2007) Evaluation of a card collection based faecal immunochemical test in screening for colorectal cancer using a two tier reflex approach; GUT; 56 (10); pp Guittet L, Bouvier V, Mariotte N, Vallee JP, Arsène D, Boutreux S, Tichet J, Launoy G (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 (2); pp Hardcastle JD, Chamberlain JO, Robinson MHE, Moss SM, Amar SS, Balfour TW, James PD, Mangham CM (1996) Randomised controlled trial of faecal-occult-blood screening for colorectal cancer; The Lancet; 348: Jepson R, Weller D, Alexander F, Walker J (2005) Impact of UK Colorectal Cancer Screening Pilot on primary care; British Journal of General Practice; 55 (510); pp20 25 Kewenter J, Brevinge H, Engaras B, Haglind E, Ahren C (1994) Results of screening, rescreening and follow-up in a prospective randomized study for detection of colorectal cancer by fecal occult blood testing; Scandinavian Journal of Gastroenterology; 29: Kronborg P, Fenger C, Olsen P, Jørgensen O, Søndergaard O (1996) Randomised study of screening for colorectal cancer with faecal-occult-blood test; The Lancet; 348 (9040) pp Mandel JS, Bond JH, Church TR, Snover DC, Bradley GM, Schuman LM, Ederer F (1993) Reducing mortality from colorectal cancer by screening for fecal occult blood. Minnesota Colon Cancer Control Study; New England Journal of Medicine; 328 (19); pp National Institute for Clinical Excellence (2005) Referral Guidelines for Suspected Cancer; accessed 30/03/2011 National Screening Committee (2011) UK Screening Portal: What is Screening? accessed 8/3/2011 Office for National Statistics (2010) Cancer and mortality in the United Kingdom ; accessed 8/3/2011 The UK CRC Screening Pilot Evaluation Team (2003) Evaluation of the UK colorectal Cancer Screening Pilot. Final Report. Available at Accessed August 2008 Towler B, Irwig L, Glasziou P, Kewenter J, Weller D, Silagy C (1998) A Systematic Review of the Effects of Screening for Colorectal Cancer using the Faecal Occult Blood Test, Hemoccult; British Medical Journal; Vol 317 pp WCISU Annual Publication NoSA8/01 (2008) Cancer Incidence in Wales ; 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. 17

20 Appendix 1: Service Models Pathway 1 Invitation to Screening and Faecal Occult Blood Test Call target population Send 1 st invitation and test kit Test kit not returned within 12 weeks Recall for FOB in 2 years GP and participant informed Negative result Test kit returned and tested. Result validated Positive result Equivocal result FIT kit sent GP and participant informed. Refer to pathway 2 Reminder sent Replacement kit sent Spoilt result No response in 6 weeks No response in 12 weeks Recall for FOB in 2 years Replacement kit requested Series of reminder letters to participant and GP at 6, 12, 18 months If no response after 18 months recall with FIT at 2 years 18 Health Professional Information

21 Pathway 2 Referral to Assessment Positive result validated S10 Letter sent to participant and copy to GP. Participant asked to contact CAD PA1 Contact made. Details confirmed. Landline and second contact number recorded PA3 No call within 2 weeks, another letter sent to participant to contact CAD PA4 Unable to contact PA11 Appointment for Telephone/Clinic Assessment with SSP given PA3 No call within 3 weeks, another letter sent to contact CAD PA4a Repeated attempt to contact within 1hr slot PA11 No contact PA11 Notify CAD PA11 SSP Assessment - telephone or clinic PA9 CAD attempts contact for 24 hrs PA11 No contact PA11 Series of 6 mthly letters to participant with copy to GP at 6, 48mths PA5/PA11 Fit for Colonoscopy PA12 Colonoscopy offered and accepted and booked PA15 Not fit for Colonoscopy PA13 Refer to pathway 4 At 5 yrs, 2 year recall for SSP assessment PA6/PA12 Refer to pathway 3 *For decline see Pathway

22 Pathway 3 Colonoscopy Appointment for Colonoscopy given PA15 DNA R2a Colonoscopy undertaken R4 Colonoscopy complete R5 Negative R6 Inform participant & GP R6 Refer to Clinical Nurse Specialist team as per local protocol Recall for FOB in 2 years from complete negative colonoscopy R6 Inconclusive Refer to MDT Pathway 7 *For decline see Pathway 8 SSP to send another appointment and notify CAD R2a 2 nd DNA R2b SSP to inform CAD - issue letter to participant and GP R2c Series of 6 mthly letters to participant. Copy to GP at 6, 48 mths R2c At 5 years recall to SSP every 2 years with reminders at 6, 12 weeks R3 Colonoscopy incomplete Cancer suspected R8 Pathology R15 Refer to Pathway 5 Biopsy or polyp removed R9 Incidental findings no biopsy. Participant informed R10 Excision incomplete or additional polypectomy needed. Repeat procedure until colon cleared R10 Excision complete and colon cleared Cancer confirmed. Participant informed Refer to MDT Pathway 7 Cancer excluded i.e. Normal or other pathology. Participant informed R17 Referral to appropriate speciality if indicated Adenoma confirmed R18 Refer to Pathway 6 or 7 where appropriate and results given to participant and GP Suspend for 5 years and GP informed Refer to exclusion criteria or routine recall and inform GP 20 Health Professional Information

23 Pathway 4 Not Fit for Colonoscopy Not fit for colonoscopy NC1 Referred to Screening Colonoscopist NC1 Suitable for radiological investigations NC3 Not suitable for radiological investigations NC2 CT colonography offered & accepted NC3 Radiology appointment agreed NC5 DNA NC8 SSP sends another appointment NC8 CT colonography undertaken NC11 Complete Incomplete Consider repeat once only. 2 nd incomplete procedure refer to screening colonoscopist for management decision NC12 NC13 Negative NC14 NC13 Other pathology suspected NC14 Adenoma suspected NC15 Cancer suspected NC16 Participant & GP informed. Recall for FOBt in 2 years NC13 Refer to screening colonoscopist for management decision NC19 *For decline see Pathway 8 Individual management plan agreed. Consider ceasing as permanently unfit and inform GP. Review date required if considered temporarily unfit NC2 2 nd DNA inform CAD and CAD to send series of 6 mthly letters to participant. Copy to GP at 6, 48 mths NC9 At 5 years recall to SSP every 2 years with reminders at 6, 12 weeks Inform participant & GP NC

24 Pathway 5 Incomplete Colonoscopy Colonoscopy undertaken and incomplete Repeat colonoscopy considered IC3 Not suitable for repeat colonoscopy R13 Suitable for repeat colonoscopy. Refer to Pathway 3 R11 2 nd incomplete. Screening colonoscopist and participant decides individual management plan R12 Suitable for radiological investigation NC3 Not suitable for radiological investigation NC2 Refer to screening colonoscopist for management decision Decline NC4 See Pathway 8 CT colonography offered Accept Radiology appointment agreed NC5 CT colonography undertaken IC15 NC11 Send another appointment DNA NC8 2 nd DNA NC9 Consider repeat once only. 2 nd incomplete procedure refer to screening colonoscopist for management decision Series of 6 mthly letters to participant. Copy to GP at 6, 48 mths NC9 At 5 yrs recall to SSP every 2 yrs with reminders at 6, 12 weeks Complete IC18 NC12 Incomplete IC16 NC13 Negative NC13 Other Pathology suspected IC20 Adenoma suspected NC16 Cancer suspected NC16 GP and participant informed 2 year recall for FOBt NC13 Refer to screening colonoscopist for management decision NC19 22 Health Professional Information

25 Pathway 6 Adenoma Surveillance Screen Detected Polyp(s) Removed - Colon Cleared AS1 **Low risk No surveillance Recall FOBt 2 years AS2 **Intermediate risk Colonoscopy 3 years AS3 **High risk Colonoscopy at 1 year AS4 Colonoscopy Outcome AS5 Carcinoma Refer to MDT Pathway 7 Intermediate risk adenomas Completely excised Incompletely excised No adenomas, or low risk adenomas Repeat colonoscopy at 3 years Completely excised High risk adenomas Incompletely excised Repeat colonoscopy at 3 years Repeat colonoscopy or flexible sigmoidoscopy within 3 months - repeated until no residual polyp Colon clear of polyps No adenomas or low risk adenomas Return to 2 yearly FOBt recall Repeat colonoscopy or flexible sigmoidoscopy within 3 months - repeated until no residual polyp Repeat colonoscopy at 1 year Colon clear of polyps **Refer to Atkins WS, Saunders BP, (2002) Surveillance guidelines after removal of colorectal adenomas polyps; GUT51 (Supp V) V6-V9. Cairns et al, (2010) Guidelines for colorectal cancer screening and surveillance in moderate and high risk groups (Update from 2002); GUT59; pp *For decline see Pathway

26 Pathway 7 Referral to Multidisciplinary Teams Colonoscopy Cancer suspected Biopsy taken Polyp removed Refer to CNS team at time of colonoscopy Histopathology confirmed Result to screening colonoscopist Copied to SSP Discuss result - agree management Cancer confirmed Refer to MDT as local protocol Other pathology or benign Refer to relevant speciality and BSW exclusion criteria SSP or Screening Colonoscopist present to colorectal MDT If complex lesion refer to MDT Further Management by BSW according to number and size of polyp - refer to Pathway 6 24 Health Professional Information

27 Pathway 8 Decline Participant on routine recall CAD inform participant they will be recalled in 2 years from date of invitation. Episode closed early on BSIMS Participant opt out on a temporary basis Equivocal pathway CAD informs participant they will be recalled in 2 years for FIT test from date of last validated result Participant declines Positive result pathway onwards CAD inform participant they will be recalled for SSP appointment 2 years from date of last positive test and GP informed Participant opt out on a permanent basis Participant sent withdrawal proforma to complete and return Proforma returned Proforma not returned Cease and GP informed Return to recall 25

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