European guidelines for quality assurance in colorectal cancer screening and diagnosis: overview and introduction to the full supplement publication.

Population-based screening for early detection and treatment of colorectal cancer (CRC) and precursor lesions, using evidence-based methods, can be effective in populations with a significant burden of the disease provided the services are of high quality. Multidisciplinary, evidence-based guidelines for quality assurance in CRC screening and diagnosis have been developed by experts in a project co-financed by the European Union. The 450-page guidelines were published in book format by the European Commission in 2010.  They include 10 chapters and over 250 recommendations, individually graded according to the strength of the recommendation and the supporting evidence. Adoption of the recommendations can improve and maintain the quality and effectiveness of an entire screening process, including identification and invitation of the target population, diagnosis and management of the disease and appropriate surveillance in people with detected lesions. To make the principles, recommendations and standards in the guidelines known to a wider professional and scientific community and to facilitate their use in the scientific literature, the original content is presented in journal format in an open-access Supplement of Endoscopy. The editors have prepared the present overview to inform readers of the comprehensive scope and content of the guidelines.

European guidelines for quality assurance in colorectal cancer screening and diagnosis. First Edition--Communication.

Multidisciplinary, evidence-based guidelines for quality assurance in colorectal cancer screening and diagnosis have been developed by experts in a project coordinated by the International Agency for Research on Cancer. The full guideline document covers the entire process of population-based screening. It consists of 10 chapters and over 250 recommendations, graded according to the strength of the recommendation and the supporting evidence. The 450-page guidelines and the extensive evidence base have been published by the European Commission. The chapter on communication includes 35 graded recommendations. The content of the chapter is presented here to promote international discussion and collaboration by making the principles and standards recommended in the new EU Guidelines known to a wider professional and scientific community. Following these recommendations has the potential to enhance the control of colorectal cancer through improvement in the quality and effectiveness of screening programmes and services.

Development of a measurement tool to assess public awareness of cancer.

OBJECTIVE: We aimed to develop and validate a measurement tool to assess cancer awareness in the general population: the cancer awareness measure (CAM). METHODS: Items assessing awareness of cancer warning signs, risk factors, incidence, screening programmes and attitudes towards help seeking were extracted from the literature or generated by expert groups. To determine reliability, the CAM was administered to a university participant panel (n=148), with a sub-sample (n=94) completing it again 2 weeks later. To establish construct validity, CAM scores of cancer experts (n=12) were compared with those of non-medical academics (n=21). Finally, university students (n=49) were randomly assigned to read either a cancer information leaflet or a leaflet with control information before completing the measure, to ensure the CAM was sensitive to change. RESULTS: Cognitive interviewing indicated that the CAM was being interpreted as intended. Internal reliability (Cronbach's alpha=0.77) and test-retest reliability (r=0.81) were high. Scores for cancer experts were significantly higher than those for non-medical academics (t(31)=6.8, P<0.001). CAM scores were higher among students who received an intervention leaflet than the control leaflet (t(47)=4.8, P<0.001). CONCLUSIONS: These studies show the psychometric properties of the CAM and support its validity as a measure of cancer awareness in the general population.

Public awareness of cancer in Britain: a population-based survey of adults.

OBJECTIVE: To assess public awareness of cancer warning signs, anticipated delay and perceived barriers to seeking medical advice in the British population. METHODS: We carried out a population-based survey using face-to-face, computer-assisted interviews to administer the cancer awareness measure (CAM), a newly developed, validated measure of cancer awareness. The sample included 2216 adults (970 males and 1246 females) recruited as part of the Office for National Statistics Opinions Survey using stratified probability sampling. RESULTS: Awareness of cancer warning signs was low when open-ended (recall) questions were used and higher with closed (recognition) questions; but on either measure, awareness was lower in those who were male, younger, and from lower socio-economic status (SES) groups or ethnic minorities. The most commonly endorsed barriers to help seeking were difficulty making an appointment, worry about wasting the doctor's time and worry about what would be found. Emotional barriers were more prominent in lower SES groups and practical barriers (e.g. too busy) more prominent in higher SES groups. Anticipated delay was lower in ethnic minority and lower SES groups. In multivariate analysis, higher symptom awareness was associated with lower anticipated delay, and more barriers with greater anticipated delay. CONCLUSIONS: A combination of public education about symptoms and empowerment to seek medical advice, as well as support at primary care level, could enhance early presentation and improve cancer outcomes.

Awareness of cancer symptoms and anticipated help seeking among ethnic minority groups in England.

OBJECTIVE: Little is known about ethnic differences in awareness of cancer-warning signs or help-seeking behaviour in Britain. As part of the National Awareness and Early Diagnosis Initiative (NAEDI), this study aimed to explore these factors as possible contributors to delay in cancer diagnosis. METHODS: We used quota sampling to recruit 1500 men and women from the six largest minority ethnic groups in England (Indian, Pakistani, Bangladeshi, Caribbean, African and Chinese). In face-to-face interviews, participants completed the newly developed cancer awareness measure (CAM), which includes questions about warning signs for cancer, speed of consultation for possible cancer symptoms and barriers to help seeking. RESULTS: Awareness of warning signs was low across all ethnic groups, especially using the open-ended (recall) question format, with lowest awareness in the African group. Women identified more emotional barriers and men more practical barriers to help seeking, with considerable ethnic variation. Anticipated delay in help seeking was higher in individuals who identified fewer warning signs and more barriers. CONCLUSIONS: The study suggests the need for culturally sensitive, community-based interventions to raise awareness and encourage early presentation.

Interventions to promote cancer awareness and early presentation: systematic review.

BACKGROUND: Low cancer awareness contributes to delay in presentation for cancer symptoms and may lead to delay in cancer diagnosis. The aim of this study was to review the evidence for the effectiveness of interventions to raise cancer awareness and promote early presentation in cancer to inform policy and future research. METHODS: We searched bibliographic databases and reference lists for randomised controlled trials of interventions delivered to individuals, and controlled or uncontrolled studies of interventions delivered to communities. RESULTS: We found some evidence that interventions delivered to individuals modestly increase cancer awareness in the short term and insufficient evidence that they promote early presentation. We found limited evidence that public education campaigns reduce stage at presentation of breast cancer, malignant melanoma and retinoblastoma. CONCLUSIONS: Interventions delivered to individuals may increase cancer awareness. Interventions delivered to communities may promote cancer awareness and early presentation, although the evidence is limited.

Cervical screening result communication: a focus-group investigation of English women's experiences and needs.

OBJECTIVE: To explore English women's experiences of cervical screening result communication. DESIGN: Qualitative study consisting of seven focus groups conducted between May 2005 and April 2006. PARTICIPANTS: 33 women with a range of screening results (normal, inadequate, borderline and abnormal) who had recently been for cervical screening, and five women who had attended a colposcopy appointment for the first time following screening. SETTING: Three screening centres (Hampshire, Reading and Sheffield) and one colposcopy clinic (Oxford) in England. RESULTS: Unsatisfactory result communication (eg, delivery of out-of-date and conflicting information) on the part of both screening centres and primary care teams was highlighted. Variable levels of general practitioner involvement in screening result provision were experienced; result-giving strategies included personal as well as generic letters and telephone calls. Means for improving women's understanding of abnormal results were described including the use of diagrams to explain the progression of cell changes, the provision of updates regarding any changes in cell abnormalities between screening tests (ie, lesion progression or regression) and contact with a knowledgeable "intermediary" outside primary care. CONCLUSIONS: The timely provision of appropriate information is an important aspect of any screening programme. Our findings suggest that there is scope for improvement in both the delivery and content of cervical screening result notifications. Regular review of patient result-giving strategies on the part of screening centres and general practices could help ensure that screening programme standards for written information are met. Enhanced communication between primary care teams and screening centres could facilitate the provision of consistent and clear result messages thereby improving women's cervical screening experiences.

Mammographic screening for young women with a family history of breast cancer: knowledge and views of those at risk.

Although the effectiveness of mammography for women under the age of 50 years with a family history of breast cancer (FHBC) has not yet been proven, annual screening is being offered to these women to manage breast cancer risk. This study investigates women's awareness and interpretation of their familial risk and knowledge and views about mammographic screening. A total of 2231 women from 21 familial/breast/genetics centres who were assessed as moderate risk (17-30% lifetime risk) or high risk (>30% lifetime risk) completed a questionnaire before their mammographic screening appointment. Most women (70%) believed they were likely, very likely or definitely going to develop breast cancer in their lifetime. Almost all women (97%) understood that the purpose of mammographic screening was to allow the early detection of breast cancer. However, 20% believed that a normal mammogram result meant there was definitely no breast cancer present, and only 4% understood that screening has not been proven to save lives in women under the age of 50 years. Women held positive views on mammography but did not appear to be well informed about the potential disadvantages. These findings suggest that further attention should be paid to improving information provision to women with an FHBC being offered routine screening.

Identifying symptoms of ovarian cancer: a qualitative and quantitative study.

INTRODUCTION: Symptoms of ovarian cancer are often vague and consequently a high proportion of women with ovarian cancer are not referred to the appropriate clinic. OBJECTIVE: To identify diagnostic factors for ovarian cancer. DESIGN: A qualitative and quantitative study. SETTING: Four UK hospitals. SAMPLE: One hundred and twenty-four women referred to hospital with suspected ovarian malignancy. METHODS: Women were interviewed prior to diagnosis (n = 63), or soon after. A thematic analysis was conducted. Emergent symptoms were quantitatively analysed to identify distinguishing features of ovarian cancer. MAIN OUTCOMES: Symptoms in women with and without ovarian cancer. RESULTS: Diagnoses comprised 44 malignancies, 59 benign gynaecological pathologies and 21 normal findings. Of the malignancies, 25 women had stage III or more disease, with an average age of 59 years. The benign/normal cohort was significantly younger (48 years). Multivariate analysis revealed persistent abdominal distension (OR 5.2, 95% CI 1.3-20.5), postmenopausal bleeding (OR 9.2, 95% CI 1.1-76.1), appetite loss (OR 3.2, 95% CI 1.1-9.2), early satiety (OR 5.0, 95% CI 1.6-15.7) and progressive symptoms (OR 3.6, 95% CI 1.3-9.8) as independent, statistically significant variables associated with ovarian cancer. Fluctuating distension was not associated with ovarian cancer (OR 0.4, 95% CI 0-4.1). Women frequently used the term bloating, but this represented two distinct events: persistent abdominal distension and fluctuating distension/discomfort. CONCLUSIONS: Ovarian cancer is not a silent killer. Clinicians should distinguish between persistent and fluctuating distension. Recognition of the significance of symptoms described by women could lead to earlier and more appropriate referral.

Predictors of breast cancer-related distress following mammography screening in younger women on a family history breast screening programme.

OBJECTIVE: This longitudinal study investigated pre-screening factors that predicted breast cancer-specific distress among 1286 women who were undergoing annual mammography screening as part of a UK programme for younger women (i.e., under 50) with a family history of breast cancer. METHODS: Women completed questionnaires one month prior to screening, and one and six months after receiving screening results. Factors measured were breast cancer worry, perceived risk, cognitive appraisals, coping, dispositional optimism, and background variables relating to screening history and family history. RESULTS: Pre-screening cancer worry was the most important predictor of subsequent worry, explaining 56/61% and 54/57% of the variance at one and six months follow-up, respectively. Other salient pre-screening predictors included high perceived risk of breast cancer, appraisals of high relevance and threat associated with the family history, and low perceived ability to cope emotionally. Women who had previously been part of the screening programme and those with a relative who had recently died from breast cancer were also vulnerable to longer-term distress. A false positive screening result, pessimistic personality, and coping efforts relating to religion and substance use predicted outcomes of screening at one month follow-up, but were not predictive in the longer-term. CONCLUSION: Early intervention to ameliorate high levels of cancer-related distress and negative appraisals would benefit some women as they progress through the familial breast screening programme.

Diagnosed with breast cancer while on a family history screening programme: an exploratory qualitative study.

Mammographic screening is offered to many women under 50 in the UK who are at moderate or high risk of developing breast cancer because of their family history of the disease. Little is understood about the impact of screening on the emotional well-being of women with a family history of breast cancer. This qualitative study explores the value that women at increased risk placed on screening, both pre- and post-cancer diagnosis and the impact of the diagnosis. In-depth interviews were undertaken with 12 women, aged 35-50, diagnosed with breast cancer while on an annual mammographic screening programme. Women described the strong sense of reassurance gained from screening prior to diagnosis. This faith in screening was reinforced by early detection of their cancer. Reactions to diagnosis ranged from devastation to relief at having finally developed a long-expected condition. Despite their positive attitudes about screening, not all women wanted to continue with surveillance. For some, prophylactic mastectomy was preferable, to reduce future cancer risk and to alleviate anxieties about the detection of another cancer at each subsequent screen. This study illustrates the positive yet diverse attitudes towards mammographic screening in this group of women with a family history of breast cancer.

Factors associated with breast cancer-specific distress in younger women participating in a family history mammography screening programme.

This multi-centre study examined factors associated with breast cancer-specific distress in 2321 women under 50 who are on a mammographic screening programme on account of their family history. Women were recruited from 21 UK centres, and completed a questionnaire one month before their screening appointment. The transactional theory of stress, appraisal, and coping provided the theoretical framework for the study. Factors measured included screening history, family history, perceived risk, cognitive appraisals, coping, optimism, and cancer worry. The findings indicate that the majority of women appraise their family history as being relevant and somewhat threatening to personal well-being, but something they can deal with emotionally. Acceptance was the most commonly used coping strategy. Hierarchical regression analysis identified that the factors most significantly associated with distress were an appraisal of high relevance and threat, increased risk perception, low dispositional optimism, and the use of both avoidant and task-orientated coping strategies. Women with children and those with relatives who have died from breast cancer were also more distressed. To conclude, most women appraised their situation positively but there is a potential profile of risk factors which may help clinicians identify those women who need extra psychological support as they progress through screening.

The psychological impact of mammographic screening. A systematic review.

Concerns have been raised regarding the possible negative psychological impact of the cancer screening programmes offered in the UK. This review aims to assess the extent of and factors associated with the adverse psychological consequences of mammographic screening. Fifty-four papers from 13 countries were identified, a majority of which were published after 1990, coinciding more or less with the onset of routine mammographic screening. The results report that mammographic screening does not appear to create anxiety in women who are given a clear result after a mammogram and are subsequently placed on routine recall. However, women who have further investigations following their routine mammogram experience significant anxiety in the short term, and possibly in the long term. The nature and extent of the further investigation that women are exposed to during mammographic screening determines the intensity of the psychological impact. Factors associated with the adverse psychological impact of mammographic screening included: social demographic factors of younger age, lower education, living in urban areas, manual occupation, and one or no children; cancer screening factors of dissatisfaction with information and communication during screening process, waiting time between recall letter and recall appointment, pain experienced during the mammographic screening procedures, and previous false positive result; and cancer worry factors including fear of cancer and greater perceived risk of breast cancer. Difficulties in measuring the psychological impact of screening are discussed, and methods of alleviating the negative psychological outcomes are suggested.

The impact of screening on future health-promoting behaviours and health beliefs: a systematic review.

OBJECTIVES: To carry out a systematic review to examine the effects of cholesterol, breast and cervical cancer screening on actual or intended health-promoting behaviours and health-related beliefs. DATA SOURCES: Eleven electronic databases (between 1980 and 2000). REVIEW METHODS: All English language studies that investigated the impact of cholesterol, breast and cervical screening programmes on health-promoting behaviours and beliefs were assessed for inclusion. The data extraction form and quality assessment criteria were developed using the NHS Centre for Reviews and Dissemination guidelines. Data were extracted and a non-quantitative synthesis was conducted. Reviewers categorised the outcomes into those that could be considered beneficial or detrimental to health. This categorisation was based on a value judgement that considered both statistical and clinical significance. RESULTS: The cholesterol studies used prospective designs more frequently, possibly as many focused on observing changes in lifestyle following screening. Participants who went for breast or cervical screening were not offered advice on lifestyle changes and most of the research into cancer screening programmes investigated issues related to uptake of screening services, explanations of why people are or are not screened and interventions to improve uptake. All three screening programmes are associated with high levels of favourable health behaviours and beliefs that have been measured, although there is evidence that recommended follow-up after screening is often not adhered to. There was no literature on the cost-effectiveness regarding the wider implications of screening (only on reduction of disease-specific mortality/morbidity), possibly due to the outcomes being very broad and not easily categorised and classified. CONCLUSIONS: The studies reviewed suggest that cholesterol screening had a positive effect on health behaviours, although participation was voluntary and those screened were possibly more motivated to make changes. These results are therefore not generalisable to the entire population and other factors need to be taken into account. Reduction in blood cholesterol levels was reported in all but two of the studies that assessed this outcome, suggesting that successful lifestyle changes were made. However, as most of the studies only reported follow-up of those screened, some of the reduction can be attributable to regression to the mean. Whether breast and cervical screening affect future health behaviours and beliefs has not been directly measured in many studies and few studies have collected baseline measures. However, evidence suggests that women who attend breast and cervical screening once are likely to reattend and attendance is associated with several positive health behaviours, although it cannot be confirmed whether the associations observed were a result of screening or because these women have a certain set of health behaviours and beliefs irrespective of their experience of screening. Areas of further research include: measuring a much wider range of behaviours and beliefs before and after screening is accepted or declined, examining the subgroup of participants who receive 'desirable' results and the impact of this on health beliefs and health-promoting behaviour, and qualitative research into the experiences of screening and how this interacts with knowledge and beliefs about other aspects of health.

The development of a new site-specific measure of quality of life for breast problems: the Cardiff breast scales.

The management of women presenting to primary care with symptoms of breast disease is of increasing interest given recent organisational changes aimed at improving accuracy and speed of referrals. As part of a randomised controlled trial, 1063 women were recruited following a primary care consultation for a variety of breast-related problems. In the absence of a suitable outcome measure for such women, a site-specific instrument was developed to complement a generic quality of life scale (SF-36). Items were generated using key informant interviews with health professionals. Draft scale items were piloted using a postal questionnaire and subsequent patient debrief interviews. A sample of respondents were also sent the same questionnaire I month later to assess test-retest reliability. Across the whole sample (n = 848), three factors were identified: 'general well-being', 'concerns' and 'relationships'. These factors accounted for 60% of total variance. Evidence of scale validity, reliability and responsiveness are reported for this new outcome measure for use in women presenting with breast problems.

New developments in genetics-knowledge, attitudes and information needs of practice nurses.

BACKGROUND: In response to increased referrals to geneticists and the predicted patient demand for genetic counselling, it has been proposed that some genetics services should be provided in primary care. Practice nurses are ideally placed to collect family history information and advise patients accordingly in new patient, family planning, well women/men and chronic disease clinics, but little is known about their knowledge, skills and attitudes towards providing genetic advice. OBJECTIVES: The survey aimed to measure the current situation with regard to: the prevalence of family history recording by practice nurses; confidence in collecting and acting upon family history; and practice nurses' knowledge about familial disorders and genetics. It also investigated what practice nurses think their role should be in relation to the delivery of genetic services; their educational needs; and the most appropriate ways of delivering training/support. METHODS: A postal questionnaire survey was carried out of all practices nurses (n = 909) in four Health Authorities in England (Oxfordshire, Northamptonshire, Nottingham and North Nottinghamshire) and one Health Board in Scotland (Lothian). Analyses were primarily descriptive. RESULTS: A total of 600 nurses (response rate = 66.0%) returned a completed questionnaire. Ninety-six per cent of practice nurses reported that they routinely collect family history information. Over half of the respondents had been consulted in the previous 3 months by patients with a worry about family history of cancer. Approximately 60% of nurses felt confident about collecting the relevant details regarding a family history of breast cancer but felt less confident in collecting the information regarding familial colorectal cancer. Nurses were also unsure how to proceed, with over a third of nurses referring patients to the GP even if they thought the patient was at population risk or, conversely, not referring those that they thought were at considerably higher risk to the GP. There was a reported need for education about familial disease in general and overall agreement that nurses could play a role in genetics in primary care. CONCLUSION: This study provides evidence of considerable activity from practice nurses regarding routine collection of family history. There is a need for further education for practice nurses regarding family history information and the new genetics so that this information is managed appropriately.

Evaluation of the impact of two educational interventions on GP management of familial breast/ovarian cancer cases: a cluster randomised controlled trial.

BACKGROUND: It has been suggested that primary care should become more involved in providing genetic services, such as basic risk assessment, to enable patients with a moderate/high risk to be referred and those with a low risk to receive reassurance and advice from their general practitioner (GP). However, GPs currently lack knowledge and confidence in this area. AIM: To investigate the effect of an in-practice educational session and information pack on GP management of familial breast/ovarian cancer cases. DESIGN OF STUDY: Cluster randomised controlled trial. SETTING: GP principals in 170 practices in Oxfordshire and Northamptonshire. Of the 688 GPs, 426 (62%) participated. METHOD: Practices were randomised either to Group A (receiving an inpractice educational session plus information pack), Group B (receiving an information pack alone), or Group C (receiving neither an educational session nor a pack). The main study outcome was the proportion of GPs making the correct referral decision on at least five out of six family history vignettes. A secondary outcome was GPs' reported confidence in managing patients with a family history of breast/ovarian cancer, measured by a score that was generated by combining responses to four questions. RESULTS: There was a 40% (95% CI = 30-50%, P < 0.001) improvement in the proportion of GPs who made the correct referral decision on at least five out of the six vignettes in Group A (111/140 [79%]) compared with Group C (controls) (63/162 [39%]), and a 42% (95% CI = 31-52%, P < 0.001) improvement in Group B (100/124 [81%]) compared with the control group. There was a trend in reported confidence in the management of individuals with a family history of breast/ovarian cancer from a mean confidence score of 2.3 in Group A to 2.0 in Group B and 1.5 in Group C (P < 0.001). CONCLUSION: Providing GPs with an information pack significantly improved referral decisions regarding patients with a family history of breast/ovarian cancer. Although extremely well received, an in-house educational session produced no additional improvements. There were, however, greater levels of reported confidence in the group who received the educational session in addition to the information pack.