Fiona Warburton

Differences in cancer awareness and beliefs between Australia, Canada, Denmark, Norway, Sweden and the UK (the International Cancer Benchmarking Partnership): do they contribute to differences in cancer survival?

Background:There are wide international differences in 1-year cancer survival. The UK and Denmark perform poorly compared with other high-income countries with similar health care systems: Australia, Canada and Sweden have good cancer survival rates, Norway intermediate survival rates. The objective of this study was to examine the pattern of differences in cancer awareness and beliefs across these countries to identify where these might contribute to the pattern of survival.Methods:We carried out a population-based telephone interview survey of 19 079 men and women aged ⩾50 years in Australia, Canada, Denmark, Norway, Sweden and the UK using the Awareness and Beliefs about Cancer measure.Results:Awareness that the risk of cancer increased with age was lower in the UK (14%), Canada (13%) and Australia (16%) but was higher in Denmark (25%), Norway (29%) and Sweden (38%). Symptom awareness was no lower in the UK and Denmark than other countries. Perceived barriers to symptomatic presentation were highest in the UK, in particular being worried about wasting the doctors time (UK 34%; Canada 21%; Australia 14%; Denmark 12%; Norway 11%; Sweden 9%).Conclusion:The UK had low awareness of age-related risk and the highest perceived barriers to symptomatic presentation, but symptom awareness in the UK did not differ from other countries. Denmark had higher awareness of age-related risk and few perceived barriers to symptomatic presentation. This suggests that other factors must be involved in explaining Denmarks poor survival rates. In the UK, interventions that address barriers to prompt presentation in primary care should be developed and evaluated.

Risk factors for delay in symptomatic presentation: a survey of cancer patients

Background:Delay in symptomatic presentation leading to advanced stage at diagnosis may contribute to poor cancer survival. To inform public health approaches to promoting early symptomatic presentation, we aimed to identify risk factors for delay in presentation across several cancers.Methods:We surveyed 2371 patients with 15 cancers about nature and duration of symptoms using a postal questionnaire. We calculated relative risks for delay in presentation (time from symptom onset to first presentation >3 months) by cancer, symptoms leading to diagnosis and reasons for putting off going to the doctor, controlling for age, sex and deprivation group.Results:Among 1999 cancer patients reporting symptoms, 21% delayed presentation for >3 months. Delay was associated with greater socioeconomic deprivation but not age or sex. Patients with prostate (44%) and rectal cancer (37%) were most likely to delay and patients with breast cancer least likely to delay (8%). Urinary difficulties, change of bowel habit, systemic symptoms (fatigue, weight loss and loss of appetite) and skin symptoms were all common and associated with delay. Overall, patients with bleeding symptoms were no more likely to delay presentation than patients who did not have bleeding symptoms. However, within the group of patients with bleeding symptoms, there were significant differences in risk of delay by source of bleeding: 35% of patients with rectal bleeding delayed presentation, but only 9% of patients with urinary bleeding. A lump was a common symptom but not associated with delay in presentation. Twenty-eight percent had not recognised their symptoms as serious and this was associated with a doubling in risk of delay. Embarrassment, worry about what the doctor might find, being too busy to go to the doctor and worry about wasting the doctor’s time were also strong risk factors for delay, but were much less commonly reported (<6%).Interpretation:Approaches to promote early presentation should aim to increase awareness of the significance of cancer symptoms and should be designed to work for people of the lowest socioeconomic status. In particular, awareness that rectal bleeding is a possible symptom of cancer should be raised.

An international measure of awareness and beliefs about cancer: development and testing of the ABC

Objectives To develop an internationally validated measure of cancer awareness and beliefs; the awareness and beliefs about cancer (ABC) measure. Design and setting Items modified from existing measures were assessed by a working group in six countries (Australia, Canada, Denmark, Norway, Sweden and the UK). Validation studies were completed in the UK, and cross-sectional surveys of the general population were carried out in the six participating countries. Participants Testing in UK English included cognitive interviewing for face validity (N=10), calculation of content validity indexes (six assessors), and assessment of test–retest reliability (N=97). Conceptual and cultural equivalence of modified (Canadian and Australian) and translated (Danish, Norwegian, Swedish and Canadian French) ABC versions were tested quantitatively for equivalence of meaning (≥4 assessors per country) and in bilingual cognitive interviews (three interviews per translation). Response patterns were assessed in surveys of adults aged 50+ years (N≥2000) in each country. Main outcomes Psychometric properties were evaluated through tests of validity and reliability, conceptual and cultural equivalence and systematic item analysis. Test–retest reliability used weighted-κ and intraclass correlations. Construction and validation of aggregate scores was by factor analysis for (1) beliefs about cancer outcomes, (2) beliefs about barriers to symptomatic presentation, and item summation for (3) awareness of cancer symptoms and (4) awareness of cancer risk factors. Results The English ABC had acceptable test–retest reliability and content validity. International assessments of equivalence identified a small number of items where wording needed adjustment. Survey response patterns showed that items performed well in terms of difficulty and discrimination across countries except for awareness of cancer outcomes in Australia. Aggregate scores had consistent factor structures across countries. Conclusions The ABC is a reliable and valid international measure of cancer awareness and beliefs. The methods used to validate and harmonise the ABC may serve as a methodological guide in international survey research.

Cancer symptom awareness and barriers to symptomatic presentation in England-are we clear on cancer?

Background:Low cancer awareness may contribute to delayed diagnosis and poor cancer survival. We aimed to quantify socio-demographic differences in cancer symptom awareness and barriers to symptomatic presentation in the English population.Methods:Using a uniquely large data set (n=49 270), we examined the association of cancer symptom awareness and barriers to presentation with age, gender, marital status and socio-economic position (SEP), using logistic regression models to control for confounders.Results:The youngest and oldest, the single and participants with the lowest SEP recognised the fewest cancer symptoms, and reported most barriers to presentation. Recognition of nine common cancer symptoms was significantly lower, and embarrassment, fear and difficulties in arranging transport to the doctor’s surgery were significantly more common in participants living in the most deprived areas than in the most affluent areas. Women were significantly more likely than men to both recognise common cancer symptoms and to report barriers. Women were much more likely compared with men to report that fear would put them off from going to the doctor.Conclusions:Large and robust socio-demographic differences in recognition of some cancer symptoms, and perception of some barriers to presentation, highlight the need for targeted campaigns to encourage early presentation and improve cancer outcomes.

Role of general practice in the diagnosis of oral cancer

The incidence of oral cancer is increasing in the United Kingdom. There is evidence that early diagnosis and effective treatment improve survival, but the poor 5-year survival rate (50%), which has not improved for several decades, has been attributed to advanced stage at presentation. To investigate the symptoms associated with cancer of the oral cavity and to explore the role of general practitioners (GP) in the identification and referral of patients, we sent 200 patients questionnaires on the route to diagnosis, symptoms, delay in presentation, and outcomes of consultations with their GP. Of 161 respondents, over half (56%) had been referred to secondary care by their GP and a third (32%) by their dentist. The most commonly reported symptoms were a mouth ulcer (32%), a lump in the face or neck (28%), and pain or soreness in the mouth or throat (27%). Fifteen per cent delayed presentation for more than 3 months. After consultation with a GP (n=109), 53% were referred to a specialist, 22% were referred for tests, 12% were told that their symptom was not serious, and 12% were treated for another condition. GPs have an important role in the identification and referral of people with oral cancer, and the clearly recognised symptoms identified in this study can be used to aid assessment and decision-making. Interventions to promote the prompt identification of oral cancer in general practice such as the opportunistic screening of high-risk patients may help to improve the poor survival rates.

Promoting early presentation of breast cancer: a preliminary evaluation of a written intervention

Objectives Older women are more likely to delay presentation with breast cancer, which contributes to poorer survival. We evaluated a written intervention that was designed to provide women with the knowledge, motivation, confidence and skills to present promptly with breast cancer symptoms. Methods We assessed acceptability and understanding of the intervention by interviewing 43 women. We used their responses to refine the intervention. We tested the effect of the intervention on breast cancer awareness, confidence and intentions to check breasts and perceived barriers to help-seeking using a self-report questionnaire administered to 61 women prior to and one month after receiving the intervention. Quantitative data were analysed using the McNemar test. Results Women were not made anxious by the intervention and understood its messages. At one month, a greater proportion of women knew that breast cancer risk increases with age, identified ≥5 non-lump symptoms and reported breast checking at least monthly in comparison to before the intervention was implemented. Discussion The intervention does not induce anxiety, is understandable, and appears to increase breast cancer awareness. The results provide justification for a more rigorous trial to test efficacy.

Risk factors and time to symptomatic presentation in leukaemia, lymphoma and myeloma.

Background:UK policy aims to improve cancer outcomes by promoting early diagnosis, which for many haematological malignancies is particularly challenging as the pathways leading to diagnosis can be difficult and prolonged.Methods:A survey about symptoms was sent to patients in England with acute leukaemia, chronic lymphocytic leukaemia (CLL), chronic myeloid leukaemia (CML), myeloma and non-Hodgkin lymphoma (NHL). Symptoms and barriers to first help seeking were examined for each subtype, along with the relative risk of waiting >3 months’ time from symptom onset to first presentation to a doctor, controlling for age, sex and deprivation.Results:Of the 785 respondents, 654 (83.3%) reported symptoms; most commonly for NHL (95%) and least commonly for CLL (67.9%). Some symptoms were frequent across diseases while others were more disease-specific. Overall, 16% of patients (n=114) waited >3 months before presentation; most often in CML (24%) and least in acute leukaemia (9%). Significant risk factors for >3 months to presentation were: night sweats (particularly CLL and NHL), thirst, abdominal pain/discomfort, looking pale (particularly acute leukaemias), and extreme fatigue/tiredness (particularly CML and NHL); and not realising symptom(s) were serious.Conclusions:These findings demonstrate important differences by subtype, which should be considered in strategies promoting early presentation. Not realising the seriousness of some symptoms indicates a worrying lack of public awareness.

Ethnic differences in cancer symptom awareness and barriers to seeking medical help in England.

Background:Ethnic differences in cancer symptom awareness and barriers to seeking medical help in the English population are not fully understood. We aimed to quantify these differences, to help develop more effective health campaigns, tailored to the needs of different ethnic groups.Methods:Using a large national data set (n=38 492) of cross-sectional surveys that used the Cancer Research UK Cancer Awareness Measure, we examined how cancer symptom awareness and barriers varied by ethnicity, controlling for socio-economic position, age and gender. Data were analysed using multivariable logistic regression.Results:Awareness of cancer symptoms was lower in minority ethnic groups than White participants, with the lowest awareness observed among Bangladeshis and Black Africans. Ethnic minorities were more likely than White British to report barriers to help-seeking. South Asians reported the highest emotional barriers, such as lack of confidence to talk to the doctor, and practical barriers, such as worry about many other things. The Irish were more likely than the White British to report practical barriers, such as being too busy to visit a doctor. White British participants were more likely than any other ethnic group to report that they would feel worried about wasting the doctor’s time. Overall, Black Africans had the lowest barriers. All differences were statistically significant (P<0.01 level), after controlling for confounders.Conclusions:Our findings suggest the need for culturally sensitive and targeted health campaigns, focused on improving recognition of cancer symptoms among ethnic minorities. Campaigns should tackle the specific barriers prevalent in each ethnic group.

“Promoting Early Presentation” intervention sustains increased breast cancer awareness in older women for three years: A randomized controlled trial

Objective In a randomized controlled trial, the Promoting Early Presentation intervention increased older women’s breast cancer awareness after two years. We investigated whether this increase was sustained at three years, and the effect on breast screening self-referral. Methods We randomly allocated 867 women attending their final invited breast screening appointment to the Promoting Early Presentation intervention or usual care. We examined breast cancer awareness after three years and breast screening self-referrals after four years. Results Women in the Promoting Early Presentation intervention arm had higher breast cancer awareness at three years than the usual care arm (odds ratio: 10.4; 95% confidence interval: 3.1 to 34.8). There were no differences in proportions self-referring for breast screening between arms, but statistical power was limited. Conclusion The Promoting Early Presentation intervention has a sustained effect on breast cancer awareness in older women. The effect on self-referral for breast screening is unclear.