Do colorectal cancer patients diagnosed as an emergency differ from non-emergency patients in their consultation patterns and symptoms? A longitudinal data-linkage study in England.

BACKGROUND: More than 20% of colorectal cancers are diagnosed following an emergency presentation. We aimed to examine pre-diagnostic primary-care consultations and related symptoms comparing patients diagnosed as emergencies with those diagnosed through non-emergency routes. METHODS: Cohort study of colorectal cancers diagnosed in England 2005 and 2006 using cancer registration data individually linked to primary-care data (CPRD/GPRD), allowing a detailed analysis of clinical information referring to the 5-year pre-diagnostic period. RESULTS: Emergency diagnosis occurred in 35% and 15% of the 1029 colon and 577 rectal cancers. 'Background' primary-care consultations (2-5 years before diagnosis) were similar for either group. In the year before diagnosis, >95% of emergency and non-emergency presenters had consulted their doctor, but emergency presenters had less frequently relevant symptoms (colon cancer: 48% vs 71% (P<0.001); rectal cancer: 49% vs 61% (P=0.043)). 'Alarm' symptoms were recorded less frequently in emergency presenters (e.g., rectal bleeding: 9 vs 24% (P=0.002)). However, about 1/5 of emergency presenters (18 and 23% for colon and rectal cancers) had 'alarm' symptoms the year before diagnosis. CONCLUSIONS: Emergency presenters have similar 'background' consultation history as non-emergency presenters. Their tumours seem associated with less typical symptoms, however opportunities for earlier diagnosis might be present in a fifth of them.

Is increased time to diagnosis and treatment in symptomatic cancer associated with poorer outcomes? Systematic review.

BACKGROUND: It is unclear whether more timely cancer diagnosis brings favourable outcomes, with much of the previous evidence, in some cancers, being equivocal. We set out to determine whether there is an association between time to diagnosis, treatment and clinical outcomes, across all cancers for symptomatic presentations. METHODS: Systematic review of the literature and narrative synthesis. RESULTS: We included 177 articles reporting 209 studies. These studies varied in study design, the time intervals assessed and the outcomes reported. Study quality was variable, with a small number of higher-quality studies. Heterogeneity precluded definitive findings. The cancers with more reports of an association between shorter times to diagnosis and more favourable outcomes were breast, colorectal, head and neck, testicular and melanoma. CONCLUSIONS: This is the first review encompassing many cancer types, and we have demonstrated those cancers in which more evidence of an association between shorter times to diagnosis and more favourable outcomes exists, and where it is lacking. We believe that it is reasonable to assume that efforts to expedite the diagnosis of symptomatic cancer are likely to have benefits for patients in terms of improved survival, earlier-stage diagnosis and improved quality of life, although these benefits vary between cancers.

Cancer detection in primary care: insights from general practitioners.

BACKGROUND: General practitioners (GPs) have a key role in cancer detection as the usual first point of contact for patients with potential cancer symptoms. Nevertheless, there is limited work that investigates their perceptions of their role in the early detection of cancer. To address this gap, we aimed to gain an in-depth understanding of cancer diagnosis from the perspective of GPs. METHODS: Individual face-to-face semi-structured interviews were conducted with 55 GPs from the North and North East of England and Greater London. All interviews were recorded and professionally transcribed verbatim. Repeated reading and co-coding engendered systematic thematic analysis across the interview material. RESULTS: Three main themes emerged from the analysis of our data. First, we identified the burden of early cancer detection in general practice, both related to the anxiety and symptoms patients bring to GPs and the need for GPs to recognise patterns of cancer symptoms and refer appropriately; second, this burden is intensified by a perceived fragmentation of services within the National Health Service (NHS); and third, it is made more complex by the interface between general practice and public health. CONCLUSIONS: GPs occupy a challenging but pivotal role in cancer detection. It is crucial that this role be supported by policy and research.

The role of primary care in cancer diagnosis via emergency presentation: qualitative synthesis of significant event reports.

BACKGROUND: Patients diagnosed with cancer in the context of an emergency presentation (EP) have poorer outcomes. It is often assumed that such patients present to the emergency department without consulting their general practitioner (GP). Little work has been done to identify primary care involvement before hospital attendance. METHODS: Participating primary care practices completed a significant event audit (SEA) report for the last patient diagnosed with cancer as a result of an EP. Accounts were synthesised and a qualitative approach to analysis undertaken. RESULTS: SEAs for 222 patients were analysed. A range of cancers were included, the most common being lung (32.4%) and upper gastrointestinal (19.8%). In most cases, patients had contact with their practice before diagnosis, primarily in the period immediately before admission. In only eight cases had there been no input from primary care. Accounts of protracted primary care contact generally demonstrated complexity, often related to comorbidity, patient-mediated factors or reassurance provided by negative investigations. Learning points identified by practices centred on the themes of presentation and diagnosis, consultation and safety-netting, communication and system issues, patient factors and referral guidelines. CONCLUSIONS: There is extensive primary care input into patients whose diagnosis results from EP, and for the most part potential 'delay' in referral can be reasonably explained by the complexity of the presentation or by coexisting patient factors.

Early mortality from colorectal cancer in England: a retrospective observational study of the factors associated with death in the first year after diagnosis.

BACKGROUND: The United Kingdom performs poorly in international comparisons of colorectal cancer survival with much of the deficit owing to high numbers of deaths close to the time of diagnosis. This retrospective cohort study investigates the patient, tumour and treatment characteristics of those who die in the first year after diagnosis of their disease. METHODS: Patients diagnosed with colon (n=65,733) or rectal (n=26,123) cancer in England between 2006 and 2008 were identified in the National Cancer Data Repository. Multivariable logistic regression was used to investigate the odds of death within 1 month, 1-3 months and 3-12 months after diagnosis. RESULTS: In all, 11.5% of colon and 5.4% of rectal cancer patients died within a month of diagnosis: this proportion decreased significantly over the study period. For both cancer sites, older age, stage at diagnosis, deprivation and emergency presentation were associated with early death. Individuals who died shortly after diagnosis were also more likely to have missing data about important prognostic factors such as disease stage and treatment. CONCLUSION: Using routinely collected data, at no inconvenience to patients, we have identified some important areas relating to early deaths from colorectal cancer, which merit further research.

Modifiable and fixed factors predicting quality of life in people with colorectal cancer.

BACKGROUND: People with colorectal cancer have impaired quality of life (QoL). We investigated what factors were most highly associated with it. METHODS: Four hundred and ninety-six people with colorectal cancer completed questionnaires about QoL, functioning, symptoms, co-morbidity, cognitions and personal and social factors. Disease, treatment and co-morbidity data were abstracted from case notes. Multiple linear regression identified modifiable and unmodifiable factors independently predictive of global quality of life (EORTC-QLQ-C30). RESULTS: Of unmodifiable factors, female sex (P<0.001), more self-reported co-morbidities (P=0.006) and metastases at diagnosis (P=0.036) significantly predicted poorer QoL, but explained little of the variability in the model (R(2)=0.064). Adding modifiable factors, poorer role (P<0.001) and social functioning (P=0.003), fatigue (P=0.001), dyspnoea (P=0.001), anorexia (P<0.001), depression (P<0.001) and worse perceived consequences (P=0.013) improved the model fit considerably (R(2)=0.574). Omitting functioning subscales resulted in recent diagnosis (P=0.002), lower perceived personal control (P=0.020) and travel difficulties (P<0.001) becoming significant predictors. CONCLUSION: Most factors affecting QoL are modifiable, especially symptoms (fatigue, anorexia, dyspnoea) and depression. Beliefs about illness are also important. Unmodifiable factors, including metastatic (or unstaged) disease at diagnosis, have less impact. There appears to be potential for interventions to improve QoL in patients with colorectal cancer.

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.

Risk factors for delayed presentation and referral of symptomatic cancer: evidence for common cancers.

BACKGROUND: It has been suggested that the known poorer survival from cancer in the United Kingdom, compared with other European countries, can be attributed to more advanced cancer stage at presentation. There is, therefore, a need to understand the diagnostic process, and to ascertain the risk factors for increased time to presentation. METHODS: We report the results from two worldwide systematic reviews of the literature on patient-mediated and practitioner-mediated delays, identifying the factors that may influence these. RESULTS: Across cancer sites, non-recognition of symptom seriousness is the main patient-mediated factor resulting in increased time to presentation. There is strong evidence of an association between older age and patient delay for breast cancer, between lower socio-economic status and delay for upper gastrointestinal and urological cancers and between lower education level and delay for breast and colorectal cancers. Fear of cancer is a contributor to delayed presentation, while sanctioning of help seeking by others can be a powerful mediator of reduced time to presentation. For practitioner delay, 'misdiagnosis' occurring either through treating patients symptomatically or relating symptoms to a health problem other than cancer, was an important theme across cancer sites. For some cancers, this could also be linked to inadequate patient examination, use of inappropriate tests or failing to follow-up negative or inconclusive test results. CONCLUSION: Having sought help for potential cancer symptoms, it is therefore important that practitioners recognise these symptoms, and examine, investigate and refer appropriately.

Factors contributing to the time taken to consult with symptoms of lung cancer: a cross-sectional study.

OBJECTIVES: To determine what factors are associated with the time people take to consult with symptoms of lung cancer, with a focus on those from rural and socially deprived areas. METHODS: A cross-sectional quantitative interview survey was performed of 360 patients with newly diagnosed primary lung cancer in three Scottish hospitals (two in Glasgow, one in NE Scotland). Supplementary data were obtained from medical case notes. The main outcome measures were the number of days from (1) the date participant defined first symptom until date of presentation to a medical practitioner; and (2) the date of earliest symptom from a symptom checklist (derived from clinical guidelines) until date of presentation to a medical practitioner. RESULTS: 179 participants (50%) had symptoms for more than 14 weeks before presenting to a medical practitioner (median 99 days; interquartile range 31-381). 270 participants (75%) had unrecognised symptoms of lung cancer. There were no significant differences in time taken to consult with symptoms of lung cancer between rural and/or deprived participants compared with urban and/or affluent participants. Factors independently associated with increased time before consulting about symptoms were living alone, a history of chronic obstructive pulmonary disease (COPD) and longer pack years of smoking. Haemoptysis, new onset of shortness of breath, cough and loss of appetite were significantly associated with earlier consulting, as were a history of chest infection and renal failure. CONCLUSION: For many people with lung cancer, regardless of location and socioeconomic status, the time between symptom onset and consultation was long enough to plausibly affect prognosis. Long-term smokers, those with COPD and/or those living alone are at particular risk of taking longer to consult with symptoms of lung cancer and practitioners should be alert to this.

Influences on pre-hospital delay in the diagnosis of colorectal cancer: a systematic review.

Colorectal cancer is a major global health problem, with survival varying according to stage at diagnosis. Delayed diagnosis can result from patient, practitioner or hospital delay. This paper reports the results of a review of the factors influencing pre-hospital delay - the time between a patient first noticing a cancer symptom and presenting to primary care or between first presentation and referral to secondary care. A systematic methodology was applied, including extensive searches of the literature published from 1970 to 2003, systematic data extraction, quality assessment and narrative data synthesis. Fifty-four studies were included. Patients' non-recognition of symptom seriousness increased delay, as did symptom denial. Patient delay was greater for rectal than colon cancers and the presence of more serious symptoms, such as pain, reduced delay. There appears to be no relationship between delay and patients' age, sex or socioeconomic status. Initial misdiagnosis, inadequate examination and inaccurate investigations increased practitioner delay. Use of referral guidelines may reduce delay, although evidence is currently limited. No intervention studies were identified. If delayed diagnosis is to be reduced, there must be increased recognition of the significance of symptoms among patients, and development and evaluation of interventions that are designed to ensure appropriate diagnosis and examination by practitioners.

Systematic review of factors influencing patient and practitioner delay in diagnosis of upper gastrointestinal cancer.

As knowledge on the causation of cancers advances and new treatments are developed, early recognition and accurate diagnosis becomes increasingly important. This review focused on identifying factors influencing patient and primary care practitioner delay for upper gastrointestinal cancer. A systematic methodology was applied, including extensive searches of the literature published from 1970 to 2003, systematic data extraction, quality assessment and narrative data synthesis. Included studies were those evaluating factors associated with the time interval between a patient first noticing a cancer symptom and presenting to primary care, between a patient first presenting to primary care and being referred to secondary care, or describing an intervention designed to reduce those intervals. Twenty-five studies were included in the review. Studies reporting delay intervals demonstrated that the patient phase of delay was greater than the practitioner phase, whilst patient-related research suggests that recognition of symptom seriousness is more important than recognition of the presence of the symptom. The main factors related to practitioner delay were misdiagnosis, application and interpretation of tests, and the confounding effect of existing disease. Greater understanding of patient factors is required, along with evaluation of interventions to ensure appropriate diagnosis, examination and investigation.

Anxiety and support in breast cancer: is this different for affluent and deprived women? A questionnaire study.

A postal questionnaire was sent to affluent and deprived women with breast cancer in order to compare psychosocial aspects of care with the purpose of understanding the balance of care and explaining why deprived women have poorer outcomes. Data were collected regarding reported sources of information, SF-36 scores and ongoing causes of anxiety. The results demonstrate that affluent women were more likely to have received information from their hospital specialist (94.8 vs 76.0%) and from a breast care nurse (70.1 vs 40.0%) than deprived women. They were also more likely to have received information from magazines (50.6 vs 33.0%), newspapers (45.5 vs 22.0%) and television news (45.5 vs 26.0%). Deprived women had poorer SF-36 scores than affluent women, and reported greater anxiety about money (12.2 vs 2.8%), other health problems (22.1 vs 8.2%) and family problems (17.5 vs 6.9%). Personal and professional support is clearly important for patients with breast cancer. Health professionals need to be aware of the greater psychological distress demonstrated by deprived women, even some years after diagnosis with breast cancer, and seek to address it.

Primary and secondary care management of women with early breast cancer from affluent and deprived areas: retrospective review of hospital and general practice records.

OBJECTIVES: To investigate whether poorer survival of breast cancer among deprived women compared with affluent women is related to their NHS care. DESIGN: Retrospective review of hospital and general practice case records. SETTING: Greater Glasgow Health Board area. SUBJECTS: Women diagnosed with breast cancer in 1992-3 who lived in the most affluent (deprivation categories 1 and 2) and the most deprived areas (deprivation categories 6 and 7) of Glasgow (Carstairs and Morris deprivation index). MAIN OUTCOME MEASURES: Breast cancer treatment, time from general practice consultation to clinic visit and surgery, and details of hospital admissions and follow up in primary and secondary care. RESULTS: The access to care and surgical and oncological treatment of women from affluent and deprived areas were similar. Admissions to hospital for problems not related to breast cancer were more common in those living in deprived areas (number admitted once or more: 51 (24%) v 13 (10%), P=0.001). Consultation patterns in general practice by the second year after diagnosis showed women in deprived areas consulting more frequently than women in affluent areas (median (interquartile range) number of consultations (5 (2-10) v 7 (4-13), P=0.01). CONCLUSION: Women living in affluent areas did not receive better NHS care for breast cancer than women in deprived areas. However, women from deprived areas seem to have greater comorbidity, and poorer outcomes from breast cancer among these women is probably due to factors which result in deprived communities having poorer health outcomes rather than to management of their breast cancer.

Socio-economic deprivation and stage of disease at presentation in women with breast cancer.

BACKGROUND: This study describes and compares the pathological prognostic factors and surgeon assessment of stage of breast cancer of women living in affluent and deprived areas to assess whether clinical stage at presentation may explain the known poorer survival outcomes for deprived women. PATIENTS AND METHODS: A population-based review of the case records of 417 women with breast cancer was carried out. RESULTS: No difference in pathological criteria was found between the 88% of women living in affluent and deprived areas for whom such data were available. Clinical assessment of the remaining 50 cases showed that women living in deprived areas were more likely to present with locally advanced or metastatic disease. CONCLUSION: The poorer survival of women from deprived areas with breast cancer may be explained by more deprived women presenting with advanced cancers.

Osteonecrosis following treatment for Hodgkin's disease.

Osteonecrosis is usually considered to be a minor and rare late sequelae of treatment for Hodgkin's Disease (HD). However, over ten years six patients out of a total of 53 patients treated for HD at the haematology department of a district general hospital developed osteonecrosis, an incidence of 11.3%. Routine isotope bone scanning of patients produced two further asymptomatic cases. These results suggest a higher incidence than previously suspected of a problem which caused our patients considerable morbidity. Further measures are required to identify and adequately treat a significant cause of late morbidity following chemotherapy for HD.