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

Public awareness of cancer in Britain: a population-based survey of adults British Journal of Cancer (2009) 101, S18 – S23 & 2009 Cancer Research UK All rights reserved 0007 – 0920/09 $32.00 www.bjcancer.com Full Paper Public awareness of cancer in Britain: a population-based survey of adults 1 1 2 3 4 1 5 ,1 K Robb , S Stubbings , A Ramirez , U Macleod , J Austoker , J Waller , S Hiom and J Wardle Cancer Research UK Health Behaviour Research Centre, Department of Epidemiology and Public Health, UCL, Gower Street, London WC1E 6BT, UK; 2 3 Cancer Research UK Promoting Early Presentation Group, Institute of Psychiatry, King’s College London, St Thomas’ Hospital, London, UK; General Practice and Primary Care, Division of Community Based Sciences, Faculty of Medicine, 1 Horselethill Road, Glasgow, UK; Cancer Research UK Primary Care Education Research Group, Cancer Epidemiology Unit, University of Oxford, Richard Doll Building, Roosevelt Drive, Oxford, UK; Health Information Department, Cancer Research UK, 61 Lincoln’s Inn Fields, London, UK 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. British Journal of Cancer (2009) 101, S18 – S23. doi:10.1038/sj.bjc.6605386 www.bjcancer.com & 2009 Cancer Research UK Keywords: cancer awareness; symptom awareness; anticipated delay; barriers; cancer warning signs Patients with cancer in the United Kingdom tend to present with Two systematic literature reviews (Ramirez et al, 1999; more advanced disease and have poorer survival rates than many of MacDonald et al, 2004), investigating risk factors for patient delay their European counterparts (Berrino et al,2007; Sant et al, 2009). in presenting with common cancers have shown the predominant The most likely explanations for this are either late presentation by risk factors to be lack of awareness of the seriousness of the patients or late onward referral by general practitioners. Among symptom or not recognising that the symptom could be caused by patients with breast cancer, there is strong evidence from individual cancer. If the symptom is atypical in nature, the risk of delayed studies and systematic reviews of the world literature that delay presentation is increased. between onset of symptoms and diagnosis/treatment is associated The literature on cancer awareness goes back to the 1950s, and with poorer survival (Richards et al, 1999). Delay may result from recent studies consistently indicate low public recognition of early patient, doctor and system factors (Andersen et al, 1995; Ramirez warning signs (Brunswick et al, 2001; Grunfeld et al, 2002; et al, 1999), and the Cancer Reform Strategy (Department of Health, McCaffery et al, 2003; Toon, 2007). However, most studies rely on 2007) has identified the need to investigate and target all of these ad hoc, non-validated measures. To the best of our knowledge, this factors to improve cancer outcomes. study is the first to use a validated measure to assess awareness in a The National Awareness and Early Diagnosis Initiative (NAEDI) population-based sample. It examines disparities in relation to consists of several work streams to help ensure delivery of the gender, age, socio-economic status (SES) and ethnicity, and Cancer Reform Strategy. One of these has focused on developing a investigates associations between awareness, perceived barriers validated measure of public awareness of cancer signs and and anticipated delay in presentation. attitudes to help seeking, and benchmarking current levels on a national basis to provide a baseline against which to evaluate MATERIALS AND METHODS policy initiatives designed to improve awareness. Data were collected as part of the Office for National Statistics Opinions Survey in September and October 2008. The Opinions *Correspondence: Professor J Wardle; E-mail: [email protected] Survey is considered a gold-standard system for recruiting a Public awareness of cancer in Britain K Robb et al S19 population-representative sample in Britain and is used for shown that closed questions produce a higher awareness score government data collection. Stratified probability sampling is used than open questions, but the correlates of the two types of question to select 67 postal sectors (sampling points) from the Postcode tend to be similar (Waller et al, 2004). Address File of ‘small users,’ a database of B27 million private The open-ended awareness item was phrased as: ‘There are households in the United Kingdom receiving fewer than 50 items many warning signs and symptoms of cancer. Please name as of mail per day. A random sample of addresses is chosen from many as you can think of’ (For discussion about the decisions on each sampling point, which yielded a sample of 3652 households wording of questions, see the CAM development paper (Stubbings for the September and October surveys. For each household, the et al, 2009)). Interviewees were prompted with ‘anything else’ until interviewer determines the household composition and identifies no further answers were provided. The closed question said: ‘The the respondent from among all adults aged over 16 using a Kish following may or may not be warning signs for cancer. We are grid. The identified adult was invited to complete the cancer interested in your opinion.’ This was followed by a list of the nine awareness measure (CAM) using a face-to-face, computer-assisted warning signs from Cancer Research UK’s leaflet Cancer – know interview. the warning signs (http://publications.cancerresearchuk.org/ WebRoot/crukstoredb/CRUK_PDFs/RTR200.pdf). We combined items on changes in bowel or bladder habits to reduce participant Socio-demographic characteristics burden. Cancer Research UK has since change their list to include The Opinions Survey includes a range of socio-demographic 12 signs. The nine signs listed in the CAM were: lump or swelling, questions, of which the following are used in the present analyses: persistent unexplained pain, unexplained bleeding, persistent gender (male, female); age group (16–24, 25–34, 35–44, 45–54, cough or hoarseness, persistent change in bowel or bladder habits, 55–64, 65 and over); marital status (married/civil partnership, not difficulty swallowing, change in the appearance of a mole, a sore married); ethnicity (white, other ethnic backgrounds); highest level that does not heal and unexplained weight loss. The open-ended of educational qualification obtained (degree or above, below question was always asked before the closed questions to reduce degree, other, no formal qualifications); and occupation (managerial/ bias. For both types of question, the number of warning signs professional, intermediate/small employers/lower supervisory, semi- endorsed was summed to produce total scores. routine/routine). Anticipated delay Closed questions were used to assess antici- Cancer awareness pated help seeking for each of the symptoms (‘If you had [y], how soon would you contact your doctor to make an appointment to The development process for the CAM is described elsewhere discuss it?’). Response options ranged from ‘1 to 3 days’ to ‘Never.’ (Stubbings et al, 2009) but briefly, items were developed using the For some analyses, response categories were combined into two existing literature, a search of unpublished reports, and input from categories of lower anticipated delay (o2 weeks) vs higher an expert advisory panel. These were then modified iteratively anticipated delay (2 weeks or more) (We recognise that o2 weeks through expert consensus, following which item analysis was used is fast, but decided that it represented a reasonable dividing line to reduce the item pool. Interviews with the general public in between prompt action and a degree of procrastination.). which respondents were encouraged to verbalise their cognitions Anticipated delay was highly correlated across symptoms and as they responded to each item were used to establish that the principal components analysis showed that anticipated delay for questions were interpreted as intended. Test–retest reliability was all nine symptoms loaded on one main factor. We therefore assessed with repeat administration over a 2-week interval (mean calculated the total number of symptoms for which anticipated r¼ 0.81). External validity was established by demonstrating that a delay was under 2 weeks, and this score was used as the outcome group of cancer experts (not involved in the CAM development) for some analyses. scored significantly higher than a group of equally educated non- experts (historians and linguists). Sensitivity to change in knowl- edge was demonstrated by showing that scores obtained by Barriers to help seeking Barriers to help seeking were assessed members of the general public were significantly higher after a with 10 items identified in the general primary care literature. They brief educational intervention. included four emotional barriers (e.g. worried what the doctor Data reported here are on awareness of warning signs, might find), three practical barriers (e.g. too busy) and three anticipated time before seeking medical help and perceived service barriers (e.g. not wanting to waste the doctor’s time). barriers to presentation for nine common warning signs. Results Response options were ‘Yes often,’ ‘Yes sometimes’ and ‘No,’ are presented in the order in which questions were asked during which for some analyses were re-categorised as ‘yes’ or ‘no.’ the interview. Summation of ‘yes’ responses was used to identify a total number of barriers. Awareness of cancer warning signs Awareness of cancer warning signs was assessed with both ‘open’ and ‘closed’ questions; neither is perfect but the sources of bias are different. Open questions Analysis estimate the extent to which cancer signs can be brought to mind, and reflect what is more usually thought of as knowledge, but Data were analysed using SPSS 14.0. Descriptive statistics were performance also depends on memory and perseverance in the completed for gender, age, marital status, ethnicity and occupa- recall task. Closed questions test recognition of symptoms and tional category (SES) and items from the CAM. w tests and avoid recall problems, but are potentially biased by the analysis of variances were used to examine relationships between respondents’ expectation about whether the signs listed are likely demographic characteristics and CAM items. Analysis of covar- to be valid, and encourage guessing. Some closed measures include iance (ANCOVA) was used to examine the relationship between ‘distractor items’ but we chose not to include such items in the demographic factors and awareness of cancer warning signs CAM because of the difficulty in identifying signs that are assessed by recall (open) and recognition (closed) questions. definitely not associated with cancer, and uncertainty over whether ANCOVA was also used to examine independent predictors of distractor endorsement should be counted negatively against the anticipated delay. There were very few missing items on the CAM final score (given that cancers can manifest in many ways and a (average 12 cases for any question). One hundred and eighty-one respondent could have experience of a cancer presenting with a were unclassified as to occupation and were excluded from the symptom we had designated a distractor). Our previous work has multivariate analyses that included SES. & 2009 Cancer Research UK British Journal of Cancer (2009) 101(S2), S18 – S23 Public awareness of cancer in Britain K Robb et al S20 RESULTS Table 2 shows multivariate analyses for the recall and recognition of the nine cancer warning signs. In an ANCOVA Of 3652 households invited to participate, 2216 (61%) respondents assessing number of warning signs recalled, women recalled agreed to be interviewed, 1093 (30%) refused and 324 (8%) could significantly more than men, older people did better than younger not be contacted after three attempts. Of the 2216 people who took people, and married people recalled more signs than those who part in an interview, eight (0.4%) did not answer any questions were not married. There was a strong SES gradient, with higher from the CAM and so are excluded from the sample. Respondent SES groups recalling significantly more symptoms. Ethnic demographics approximated the British population but with a minorities had lower symptom recall than white respondents; an trend towards higher levels of education and occupational status association that persisted after controlling for SES. (see Table 1). In an ANCOVA of the total number of cancer warning signs recognised, being female, older, married, white, and in a higher SES group, were significant independent predictors (see Table 2). Recall and recognition of cancer warning signs Recall (open question) was good for the classic tumour symptom Barriers to help seeking of lump/swelling (68%), but very poor for all other symptoms (e.g. 5% for a sore that does not heal). Figure 1 shows recall for each The most widely endorsed barriers to consultation were difficulty warning sign by gender. Overall, men recalled 2.0 ( 1.7) signs and making an appointment (37% men, 45% women), not wanting to women recalled 2.4 ( 1.6) (t(2194)¼ 6.43, Po0.001). ‘waste the doctor’s time’ (36% men, 41% women) and worry about Recognition (closed items) gave a considerably higher score what the doctor might find (34% men, 40% women), but all items than recall. Change in the appearance of a mole and lump/swelling were endorsed to some extent (see Table 3). Grouping the barriers were the most recognised (both 94%), and even the least into emotional, practical and service indicated that lower SES recognised sign (a sore that does not heal) was acknowledged by respondents endorsed more emotional barriers – being worried over 60% of participants. However, there was still an SES gradient about what the doctor might find, embarrassed and not confident for each warning sign, with the highest SES group recognising a in talking to the doctor about the symptom. Higher SES ± ± total of 7.6 ( 1.9) signs compared with 6.9 ( 2.2) in the lowest respondents were more likely to report practical barriers (too SES group (F(2,2015)¼ 20.31, Po0.001). Women recognised 7.4 busy, having other things to worry about). There were no SES ± ± ( 2.0) signs compared with men’s 7.0 ( 2.2) (t(2195)¼ 4.99 differences in service barriers. All barriers were equally endorsed Po0.001). White participants recognised 7.3 ( 2.0) warning by white and ethnic minority groups with the exception of not signs, while respondents from other ethnic backgrounds recog- wanting to ‘waste the doctor’s time’ where 40% of white nised 6.2 ( 2.9) (t(2195)¼ 6.22, Po0.001). In relation to age, respondents endorsed this item compared with only 24% of ethnic respondents aged 55–64 years reported the most (7.8 1.7), and 2 minorities (w (1,2174)¼ 13.16, Po0.001). those aged 16–24 reported the fewest (6.1 2.1; F(5,2196)¼ 22.12, Po0.001). Anticipated delay Table 1 Demographic characteristics of sample (n¼ 2208) The majority of respondents indicated that they would seek medical help in o2 weeks for most symptoms (see Table 4). Lower N % SES respondents reported less anticipated delay than higher SES respondents for each of the warning signs. Gender The relationship between anticipated delay and age was Male 968 43.8 Female 1240 56.2 examined by looking at the total number of symptoms for which respondents would wait 2 weeks or more before seeking help. The Age (years) 16 – 24 170 7.7 25 – 34 323 14.6 35 – 44 382 17.3 100 45 – 54 310 14.0 90 Men Women 55 – 64 397 18.0 65 and over 626 28.4 Marital status Married/civil partnership 984 44.6 Not married 1224 55.4 Ethnicity White 2064 93.5 Other ethnic backgrounds 144 6.5 Occupation (SES) Managerial/professional (higher SES) 744 33.7 10 Intermediate/small employers/lower supervisory (mid SES) 626 28.4 Semi-routine/routine (lower SES) 657 29.8 Not classified 181 8.2 Highest qualification obtained Degree or above 368 16.7 Below degree 791 35.8 Other 254 11.5 No formal qualifications 343 15.5 Missing data 452 20.5 Abbreviation: SES¼ socio-economic status. Figure 1 Recall of nine warning signs. British Journal of Cancer (2009) 101(S2), S18 – S23 & 2009 Cancer Research UK Lump or swelling Unexplained bleeding Unexplained pain Unexplained weight loss Change in a mole Change in bowel/bladder habits Persistent cough Sore that does not heal Difficulty swallowing % mentioning Public awareness of cancer in Britain K Robb et al S21 Table 2 Analysis of covariance for recall and recognition of the nine cancer warning signs Recall (open question) Recognition (closed question) Demographic groups Mean (95% CI) P Mean (95% CI) P Gender Male 1.64 (1.47, 1.80) 6.47 (6.25, 6.68) Female 2.20 (2.04, 2.36) F(1,2014)¼ 64.10, Po0.001 7.02 (6.82, 7.23) F(1,2015)¼ 38.41, Po0.001 Age (years) 16 – 24 1.49 (1.16, 1.83) 5.90 (5.46, 6.33) 25 – 34 1.72 (1.51, 1.93) 6.48 (6.21, 6.75) 35 – 44 1.90 (1.69, 2.10) 6.63 (6.37, 6.89) 45 – 54 2.08 (1.87, 2.30) 7.10 (6.82, 7.37) 55 – 64 2.51 (2.30, 2.72) 7.39 (7.12, 7.66) 65 and over 1.80 (1.62, 1.99) F(5,2014)¼ 13.38, Po0.001 6.97 (6.73, 7.21) F(5,2015)¼ 13.15, Po0.001 Marital status Married 2.07 (1.90, 2.24) 6.88 (6.67, 7.10) Not married 1.77 (1.60, 1.93) F(1,2014)¼ 17.49, Po0.001 6.60 (6.39, 6.81) F(1,2015)¼ 9.28, P¼ 0.002 Ethnicity White 2.21 (2.12, 2.29) 7.16 (7.06, 7.27) Other ethnic backgrounds 1.63 (1.34, 1.91) F(1,2014)¼ 14.95, Po0.001 6.32 (5.96, 6.69) F(1,2015)¼ 19.26, Po0.001 Occupation (SES) Managerial/professional (higher SES) 2.31 (2.14, 2.49) 7.13 (6.90, 7.35) Intermediate/small employers/lower supervisory (mid SES) 1.86 (1.68, 2.05) 6.70 (6.47, 6.94) Semi-routine/routine (lower SES) 1.58 (1.40, 1.76) F(2,2014)¼ 38.45, Po0.001 6.40 (6.18, 6.63) F(2,2015)¼ 22.43, Po0.001 Abbreviation: SES¼ socio-economic status. Table 3 Emotional, practical and service barriers to seeking medical help (% endorsing each) by socio-economic group (indexed by occupational category) All (n¼ 2208) Lower SES (n¼ 662) Mid SES (n¼ 627) Higher SES (n¼ 746) Significance Emotional barriers Worried what doctor might find 36.5 (807) 44.1 (283) 35.2 (217) 33.2 (243) w (1, 1989)¼ 17.08, Po0.001 Too scared 24.8 (547) 26.4 (168) 25.7 (158) 23.3 (169) w (1, 1977)¼ 1.82, P¼ 0.177 Too embarrassed 20.5 (452) 25.5 (164) 19.4 (119) 15.6 (115) w (1, 1993)¼ 20.74, Po0.001 Not confident to talk about symptom 11.8 (260) 13.9 (89) 10.7 (66) 10.1 (74) w (1, 1992)¼ 4.77, P¼ 0.029 Practical barriers Too busy 28.4 (626) 19.6 (127) 26.9 (167) 38.3 (282) w (1, 2005)¼ 59.0, Po0.001 Other things to worry about 21.7 (480) 17.6 (113) 21.7 (134) 26.4 (194) w (1, 1996)¼ 15.34, Po0.001 Difficult to arrange transport 4.7 (103) 6.6 (43) 4.8 (30) 2.8 (21) w (1, 2010)¼ 11.13, P¼ 0.001 Service barriers Difficult to make appointment 40.7 (899) 41.6 (266) 40.7 (251) 43.3 (315) w (1, 1983)¼ .41, P¼ 0.522 Worried about wasting doctor’s time 38.1 (842) 39.4 (251) 42.7 (265) 36.4 (269) w (1, 1995)¼ 1.44, P¼ 0.229 Difficult to talk to doctor 13.4 (296) 14.5 (90) 14.2 (86) 12.5 (89) w (1, 1938)¼ 1.15, P¼ 0.283 Abbreviation: SES¼ socio-economic status. Table 4 Percentage saying that they would contact the doctor in o2 weeks for each warning sign by socio-economic group (indexed by occupational category) Lower SES (n¼ 662) Mid SES (n¼ 627) Higher SES (n¼ 746) Significance Warning signs % (n) Unexplained bleeding 95.3 (614) 91.9 (564) 92.0 (674) w (1, 1991)¼ 5.82, P¼ 0.016 Difficulty swallowing 85.6 (545) 79.2 (488) 73.8 (542) w (1, 1987)¼ 28.41, Po0.001 Lump or swelling 83.4 (534) 76.6 (472) 73.0 (534) w (1, 1988)¼ 21.26, Po0.001 Change in appearance of a mole 82.8 (519) 74.2 (451) 71.2 (521) w (1, 1967)¼ 24.24, Po0.001 Unexplained pain 78.5 (499) 71.5 (434) 67.5 (487) w (1, 1965)¼ 20.24, Po0.001 Sore that does not heal 70.2 (447) 57.8 (354) 54.1 (394) w (1, 1977)¼ 35.84, Po0.001 Change in bowel/bladder habits 70.7 (451) 59.2 (362) 50.6 (371) w (1, 1982)¼ 56.87, Po0.001 Cough or hoarseness 56.3 (359) 45.4 (278) 37.5 (275) w (1, 1984)¼ 48.32, Po0.001 Unexplained weight loss 50.8 (318) 34.1 (207) 27.4 (200) w (1, 1963)¼ 77.73, Po0.001 Abbreviation: SES¼ socio-economic status. & 2009 Cancer Research UK British Journal of Cancer (2009) 101(S2), S18 – S23 Public awareness of cancer in Britain K Robb et al S22 youngest age group and the oldest group reported the lowest consistent with the observation that some reported barriers to help anticipated delay (16–24 years: 3.90 2.71 and 65þ years: seeking were lower in these groups. While these results are 3.77 2.67), with the age groups in between reporting greater encouraging both in terms of general help-seeking behaviour and ± ± anticipated delay (25–34: 4.46 2.64, 35–44: 4.48 2.73, 45–54: inequalities, they are severely limited by their hypothetical nature. ± ± 4.33 2.78, 55–64: 4.01 2.69; F(5,2207)¼ 5.22, Po0.001). The gap between good intentions and behaviour is well recognised in the psychological literature (Sheeran, 2002), and actual help seeking is likely to be less prompt than hypothetical intentions. Associations between awareness, perceived barriers and Being worried about what the doctor might find was the most anticipated delay commonly endorsed emotional barrier to prompt help seeking, which is in line with previous work citing fear and fatalism as In an ANCOVA, including the number of warning signs identified barriers to cancer-protective behaviours (Powe, 1995; Aro et al, and the number of barriers endorsed, perceiving more barriers to 2001; Lostao et al, 2001; Subramanian et al, 2004). But it was also help seeking was associated with greater anticipated delay notable that almost 40% of people felt that concern about ‘wasting (F(1,2008)¼ 91.70, Po0.001). Recall (open question) was not the doctor’s time’ could make them delay presentation. This associated with anticipated delay, but recognising more symptoms suggests that some people may not feel confident that their was associated with lower anticipated delay independently of symptom needs medical attention or perceive their doctor as too gender, age, ethnicity, occupation and perceived barriers busy to be bothered with their concerns. Either way, it should be (F(1,2008)¼ 4.93, Po0.02). Significant independent effects were possible to address this issue through primary care initiatives that maintained for gender (women: adjusted mean¼ 3.58 0.13, men: empower people to believe their symptom is important and 3.97 0.14; F(1,2008)¼ 11.41, P¼ 0.001). Being from an ethnic deserving of medical attention. The most endorsed barrier of all ± ± minority group (ethnic minority: 3.42 0.24, white: 4.14 0.06; was ‘difficult to make an appointment,’ and this perception should F(1,2008)¼ 8.58, P¼ 0.003) or a lower SES background (lowest change as primary care services continue to improve. ± ± SES group: 3.14 0.15, highest SES group: 4.32 0.14; Recognising more warning signs was related to lower anticipated F(2,2008)¼ 36.36, Po0.001) was associated with less anticipated delay independently of SES, ethnicity, age, gender and perceived delay. barriers. This is consistent with the idea that awareness of cancer warning signs could ultimately contribute to earlier detection of cancer. In contrast, recall of cancer warning signs was not DISCUSSION associated with anticipated delay, despite having many of the In reviewing the literature we found no other study using a same demographic correlates. This has some ecological validity in validated measure to assess cancer awareness in a population- that it may be less important for people to be able to recall the nine based sample. In this British, population-based sample, recall of warning signs than to recognise a symptom as serious once they cancer warning signs using an open question was relatively poor notice it. Equally, it could relate to the question formats: both (o30%) for all symptoms except ‘lump/swelling,’ which was recognition and delay questions were presented as a series of nine mentioned by 68% of respondents. Recognition of cancer warning symptoms, which could in part explain why recognition showed signs with a closed question was much higher, with ‘mole’ and closer associations with delay than did recall. ‘lump/swelling’ being identified by over 90% of participants. Age showed significant associations with both recall and The higher levels of recognition for those two warning signs may recognition of warning signs, such that scores increased with reflect the success of breast and skin cancer awareness-raising increasing age up to 64 years. However, the oldest age group (65 campaigns (e.g. Breast Cancer Awareness Month and the SunSmart years and over) had lower recall and recognition, which is Campaign – http://www.sunsmart.org.uk). interesting and concerning, given that this group is at highest We predicted that recognition scores would be greater than risk of cancer. This finding may reflect memory loss or cognitive recall scores (Waller et al, 2004), but it is difficult to determine impairments in this group (mean age was 75 years with a range of 65–101), or could reflect their greater lifetime experience of which better captures the concept of cancer awareness. Recall underestimates awareness because it is limited by memory, while possible cancer symptoms, which have proved benign. An recognition overestimates awareness because participants find it alternative explanation might be that they have never been made easy to guess. However, recall and recognition had similar aware of the warning signs because cancer would have been correlates, both being higher in respondents who were female, discussed less when they were younger. Further work is needed to older, white and from higher SES backgrounds. Ajzen and Fishbein explore this in greater detail. (2000) argue that what is important in predicting attitudes, This study has strengths and weaknesses. One strength is the use intentions and behaviour is the salience or accessibility of of a population-based sample. Although the response rate was only beliefs, the most accessible beliefs being those that can be readily 61% and we do not know how the remaining 39% would score on brought to mind: ‘people’s attitudes follow spontaneously and cancer awareness, it is in line with other population-based consistently from beliefs accessible in memory and then guide contemporary surveys. In addition, some cases (B8%) were corresponding behavior.’ Applying their proposal to our data excluded from analyses because they could not be classified for would suggest that symptoms that are recalled in response to SES, which could bias the results. Fortunately, there were few open-ended questions are more likely to lead to help seeking than missing data on the CAM questions, and therefore responses are those that are merely recognised. However, there is a need for representative of the survey respondents, but generalisation further investigation of the ways in which different approaches to beyond British adults cannot be assumed. measuring cancer knowledge relate to behavioural outcomes, and A second strength is the use of a validated measure of cancer to determine the most useful measures for predicting early awareness, but nonetheless there is no perfect measure, and both detection behaviours. the recall and recognition questions have limitations, as discussed. Most respondents anticipated little delay in seeking medical help Relying on hypothetical questions to assess delay revealed if they noticed a cancer warning sign, saying that they would surprisingly prompt help-seeking intentions, which is likely to be contact their doctor within 2 weeks for the majority of symptoms. an overestimate compared to real-life situations with all their Lower SES and ethnic minority groups reported less anticipated uncertainties and competing priorities. However, this indicates delay, a finding inconsistent with systematic reviews showing that people are intuitively aware of the importance of prompt lower levels of education and non-white ethnicity to be associated presentation, and therefore that interventions to facilitate this with longer delay (Ramirez et al, 1999; Mitchell et al, 2008) but should fall on fertile ground. The order of the questions in the British Journal of Cancer (2009) 101(S2), S18 – S23 & 2009 Cancer Research UK Public awareness of cancer in Britain K Robb et al S23 CAM may have an impact on the findings, particularly the fact that Overall, it seems that whether cancer awareness is assessed by cancer symptoms are listed in the recognition questions before recall or recognition there is room for improvement in levels of asking about anticipated delay – this may have the effect of public awareness particularly among men, lower SES groups and priming respondents to say that they would present promptly. those from ethnic minorities. If the objectives of NAEDI are to be However, in most situations it is not pragmatically feasible to achieved, the public needs not only to be able to recall and randomise the order in which the questions are asked, and possible recognise warning signs but also to understand their potentially priming effects were considered when designing the measure. serious significance and avoid delay in seeking medical help. A A weakness of the study was that because cancer is so strongly combination of public education about symptoms, empowering related to increasing age, many respondents were at relatively low people to seek medical advice and providing positive information risk due to their young age. Thus, the results may not be fully about the value of early detection could enhance early presentation applicable to the older, most at-risk group. and improve cancer outcomes. If the CAM is used nationally and internationally, it will provide an exciting opportunity for researchers to compare levels of awareness between countries and over time. Use of the CAM ACKNOWLEDGEMENTS should aid health educators in identifying subgroups within the population with lower levels of cancer awareness. In addition, We are grateful to all the experts consulted in the development of evaluation of cancer awareness-raising campaigns will benefit from the Cancer Awareness Measure and to the Opinions Survey team at a validated measure. Further work is needed to explore the reasons the Office for National Statistics. The National Survey was funded for patient delay in presenting with cancer symptoms because by the Department of Health. measuring awareness is only the first step in beginning to understand this process. 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Br J Cancer 101(Suppl 2): S13 –S17 illness attitudes as predictors of breast cancer screening attendance. Eur J Subramanian S, Klosterman M, Amonkar MM, Hunt TL (2004) Adherence with Public Health 11: 274– 279 colorectal cancer screening guidelines: a review. Prev Med 38: 536–550 MacDonald S, Macleod U, Mitchell E (2004) Factors Influencing Patient and Toon E (2007) Cancer as the general population knows it: knowledge, fear, Primary Care Delay in the Diagnosis of Cancer (project M0005101440). and lay education in 1950s Britain. Bull Hist Med 8: 116–138 Final report to the Department of Health. University of Glasgow: Waller J, McCaffery K, Wardle J (2004) Measuring cancer knowledge: Glasgow comparing prompted and unprompted recall. Br J Psychol 95: 219–234 & 2009 Cancer Research UK British Journal of Cancer (2009) 101(S2), S18 – S23 http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png British Journal of Cancer Springer Journals

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

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Springer Journals
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Copyright © 2009 by The Author(s)
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Biomedicine; Biomedicine, general; Cancer Research; Epidemiology; Molecular Medicine; Oncology; Drug Resistance
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0007-0920
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10.1038/sj.bjc.6605386
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British Journal of Cancer (2009) 101, S18 – S23 & 2009 Cancer Research UK All rights reserved 0007 – 0920/09 $32.00 www.bjcancer.com Full Paper Public awareness of cancer in Britain: a population-based survey of adults 1 1 2 3 4 1 5 ,1 K Robb , S Stubbings , A Ramirez , U Macleod , J Austoker , J Waller , S Hiom and J Wardle Cancer Research UK Health Behaviour Research Centre, Department of Epidemiology and Public Health, UCL, Gower Street, London WC1E 6BT, UK; 2 3 Cancer Research UK Promoting Early Presentation Group, Institute of Psychiatry, King’s College London, St Thomas’ Hospital, London, UK; General Practice and Primary Care, Division of Community Based Sciences, Faculty of Medicine, 1 Horselethill Road, Glasgow, UK; Cancer Research UK Primary Care Education Research Group, Cancer Epidemiology Unit, University of Oxford, Richard Doll Building, Roosevelt Drive, Oxford, UK; Health Information Department, Cancer Research UK, 61 Lincoln’s Inn Fields, London, UK 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. British Journal of Cancer (2009) 101, S18 – S23. doi:10.1038/sj.bjc.6605386 www.bjcancer.com & 2009 Cancer Research UK Keywords: cancer awareness; symptom awareness; anticipated delay; barriers; cancer warning signs Patients with cancer in the United Kingdom tend to present with Two systematic literature reviews (Ramirez et al, 1999; more advanced disease and have poorer survival rates than many of MacDonald et al, 2004), investigating risk factors for patient delay their European counterparts (Berrino et al,2007; Sant et al, 2009). in presenting with common cancers have shown the predominant The most likely explanations for this are either late presentation by risk factors to be lack of awareness of the seriousness of the patients or late onward referral by general practitioners. Among symptom or not recognising that the symptom could be caused by patients with breast cancer, there is strong evidence from individual cancer. If the symptom is atypical in nature, the risk of delayed studies and systematic reviews of the world literature that delay presentation is increased. between onset of symptoms and diagnosis/treatment is associated The literature on cancer awareness goes back to the 1950s, and with poorer survival (Richards et al, 1999). Delay may result from recent studies consistently indicate low public recognition of early patient, doctor and system factors (Andersen et al, 1995; Ramirez warning signs (Brunswick et al, 2001; Grunfeld et al, 2002; et al, 1999), and the Cancer Reform Strategy (Department of Health, McCaffery et al, 2003; Toon, 2007). However, most studies rely on 2007) has identified the need to investigate and target all of these ad hoc, non-validated measures. To the best of our knowledge, this factors to improve cancer outcomes. study is the first to use a validated measure to assess awareness in a The National Awareness and Early Diagnosis Initiative (NAEDI) population-based sample. It examines disparities in relation to consists of several work streams to help ensure delivery of the gender, age, socio-economic status (SES) and ethnicity, and Cancer Reform Strategy. One of these has focused on developing a investigates associations between awareness, perceived barriers validated measure of public awareness of cancer signs and and anticipated delay in presentation. attitudes to help seeking, and benchmarking current levels on a national basis to provide a baseline against which to evaluate MATERIALS AND METHODS policy initiatives designed to improve awareness. Data were collected as part of the Office for National Statistics Opinions Survey in September and October 2008. The Opinions *Correspondence: Professor J Wardle; E-mail: [email protected] Survey is considered a gold-standard system for recruiting a Public awareness of cancer in Britain K Robb et al S19 population-representative sample in Britain and is used for shown that closed questions produce a higher awareness score government data collection. Stratified probability sampling is used than open questions, but the correlates of the two types of question to select 67 postal sectors (sampling points) from the Postcode tend to be similar (Waller et al, 2004). Address File of ‘small users,’ a database of B27 million private The open-ended awareness item was phrased as: ‘There are households in the United Kingdom receiving fewer than 50 items many warning signs and symptoms of cancer. Please name as of mail per day. A random sample of addresses is chosen from many as you can think of’ (For discussion about the decisions on each sampling point, which yielded a sample of 3652 households wording of questions, see the CAM development paper (Stubbings for the September and October surveys. For each household, the et al, 2009)). Interviewees were prompted with ‘anything else’ until interviewer determines the household composition and identifies no further answers were provided. The closed question said: ‘The the respondent from among all adults aged over 16 using a Kish following may or may not be warning signs for cancer. We are grid. The identified adult was invited to complete the cancer interested in your opinion.’ This was followed by a list of the nine awareness measure (CAM) using a face-to-face, computer-assisted warning signs from Cancer Research UK’s leaflet Cancer – know interview. the warning signs (http://publications.cancerresearchuk.org/ WebRoot/crukstoredb/CRUK_PDFs/RTR200.pdf). We combined items on changes in bowel or bladder habits to reduce participant Socio-demographic characteristics burden. Cancer Research UK has since change their list to include The Opinions Survey includes a range of socio-demographic 12 signs. The nine signs listed in the CAM were: lump or swelling, questions, of which the following are used in the present analyses: persistent unexplained pain, unexplained bleeding, persistent gender (male, female); age group (16–24, 25–34, 35–44, 45–54, cough or hoarseness, persistent change in bowel or bladder habits, 55–64, 65 and over); marital status (married/civil partnership, not difficulty swallowing, change in the appearance of a mole, a sore married); ethnicity (white, other ethnic backgrounds); highest level that does not heal and unexplained weight loss. The open-ended of educational qualification obtained (degree or above, below question was always asked before the closed questions to reduce degree, other, no formal qualifications); and occupation (managerial/ bias. For both types of question, the number of warning signs professional, intermediate/small employers/lower supervisory, semi- endorsed was summed to produce total scores. routine/routine). Anticipated delay Closed questions were used to assess antici- Cancer awareness pated help seeking for each of the symptoms (‘If you had [y], how soon would you contact your doctor to make an appointment to The development process for the CAM is described elsewhere discuss it?’). Response options ranged from ‘1 to 3 days’ to ‘Never.’ (Stubbings et al, 2009) but briefly, items were developed using the For some analyses, response categories were combined into two existing literature, a search of unpublished reports, and input from categories of lower anticipated delay (o2 weeks) vs higher an expert advisory panel. These were then modified iteratively anticipated delay (2 weeks or more) (We recognise that o2 weeks through expert consensus, following which item analysis was used is fast, but decided that it represented a reasonable dividing line to reduce the item pool. Interviews with the general public in between prompt action and a degree of procrastination.). which respondents were encouraged to verbalise their cognitions Anticipated delay was highly correlated across symptoms and as they responded to each item were used to establish that the principal components analysis showed that anticipated delay for questions were interpreted as intended. Test–retest reliability was all nine symptoms loaded on one main factor. We therefore assessed with repeat administration over a 2-week interval (mean calculated the total number of symptoms for which anticipated r¼ 0.81). External validity was established by demonstrating that a delay was under 2 weeks, and this score was used as the outcome group of cancer experts (not involved in the CAM development) for some analyses. scored significantly higher than a group of equally educated non- experts (historians and linguists). Sensitivity to change in knowl- edge was demonstrated by showing that scores obtained by Barriers to help seeking Barriers to help seeking were assessed members of the general public were significantly higher after a with 10 items identified in the general primary care literature. They brief educational intervention. included four emotional barriers (e.g. worried what the doctor Data reported here are on awareness of warning signs, might find), three practical barriers (e.g. too busy) and three anticipated time before seeking medical help and perceived service barriers (e.g. not wanting to waste the doctor’s time). barriers to presentation for nine common warning signs. Results Response options were ‘Yes often,’ ‘Yes sometimes’ and ‘No,’ are presented in the order in which questions were asked during which for some analyses were re-categorised as ‘yes’ or ‘no.’ the interview. Summation of ‘yes’ responses was used to identify a total number of barriers. Awareness of cancer warning signs Awareness of cancer warning signs was assessed with both ‘open’ and ‘closed’ questions; neither is perfect but the sources of bias are different. Open questions Analysis estimate the extent to which cancer signs can be brought to mind, and reflect what is more usually thought of as knowledge, but Data were analysed using SPSS 14.0. Descriptive statistics were performance also depends on memory and perseverance in the completed for gender, age, marital status, ethnicity and occupa- recall task. Closed questions test recognition of symptoms and tional category (SES) and items from the CAM. w tests and avoid recall problems, but are potentially biased by the analysis of variances were used to examine relationships between respondents’ expectation about whether the signs listed are likely demographic characteristics and CAM items. Analysis of covar- to be valid, and encourage guessing. Some closed measures include iance (ANCOVA) was used to examine the relationship between ‘distractor items’ but we chose not to include such items in the demographic factors and awareness of cancer warning signs CAM because of the difficulty in identifying signs that are assessed by recall (open) and recognition (closed) questions. definitely not associated with cancer, and uncertainty over whether ANCOVA was also used to examine independent predictors of distractor endorsement should be counted negatively against the anticipated delay. There were very few missing items on the CAM final score (given that cancers can manifest in many ways and a (average 12 cases for any question). One hundred and eighty-one respondent could have experience of a cancer presenting with a were unclassified as to occupation and were excluded from the symptom we had designated a distractor). Our previous work has multivariate analyses that included SES. & 2009 Cancer Research UK British Journal of Cancer (2009) 101(S2), S18 – S23 Public awareness of cancer in Britain K Robb et al S20 RESULTS Table 2 shows multivariate analyses for the recall and recognition of the nine cancer warning signs. In an ANCOVA Of 3652 households invited to participate, 2216 (61%) respondents assessing number of warning signs recalled, women recalled agreed to be interviewed, 1093 (30%) refused and 324 (8%) could significantly more than men, older people did better than younger not be contacted after three attempts. Of the 2216 people who took people, and married people recalled more signs than those who part in an interview, eight (0.4%) did not answer any questions were not married. There was a strong SES gradient, with higher from the CAM and so are excluded from the sample. Respondent SES groups recalling significantly more symptoms. Ethnic demographics approximated the British population but with a minorities had lower symptom recall than white respondents; an trend towards higher levels of education and occupational status association that persisted after controlling for SES. (see Table 1). In an ANCOVA of the total number of cancer warning signs recognised, being female, older, married, white, and in a higher SES group, were significant independent predictors (see Table 2). Recall and recognition of cancer warning signs Recall (open question) was good for the classic tumour symptom Barriers to help seeking of lump/swelling (68%), but very poor for all other symptoms (e.g. 5% for a sore that does not heal). Figure 1 shows recall for each The most widely endorsed barriers to consultation were difficulty warning sign by gender. Overall, men recalled 2.0 ( 1.7) signs and making an appointment (37% men, 45% women), not wanting to women recalled 2.4 ( 1.6) (t(2194)¼ 6.43, Po0.001). ‘waste the doctor’s time’ (36% men, 41% women) and worry about Recognition (closed items) gave a considerably higher score what the doctor might find (34% men, 40% women), but all items than recall. Change in the appearance of a mole and lump/swelling were endorsed to some extent (see Table 3). Grouping the barriers were the most recognised (both 94%), and even the least into emotional, practical and service indicated that lower SES recognised sign (a sore that does not heal) was acknowledged by respondents endorsed more emotional barriers – being worried over 60% of participants. However, there was still an SES gradient about what the doctor might find, embarrassed and not confident for each warning sign, with the highest SES group recognising a in talking to the doctor about the symptom. Higher SES ± ± total of 7.6 ( 1.9) signs compared with 6.9 ( 2.2) in the lowest respondents were more likely to report practical barriers (too SES group (F(2,2015)¼ 20.31, Po0.001). Women recognised 7.4 busy, having other things to worry about). There were no SES ± ± ( 2.0) signs compared with men’s 7.0 ( 2.2) (t(2195)¼ 4.99 differences in service barriers. All barriers were equally endorsed Po0.001). White participants recognised 7.3 ( 2.0) warning by white and ethnic minority groups with the exception of not signs, while respondents from other ethnic backgrounds recog- wanting to ‘waste the doctor’s time’ where 40% of white nised 6.2 ( 2.9) (t(2195)¼ 6.22, Po0.001). In relation to age, respondents endorsed this item compared with only 24% of ethnic respondents aged 55–64 years reported the most (7.8 1.7), and 2 minorities (w (1,2174)¼ 13.16, Po0.001). those aged 16–24 reported the fewest (6.1 2.1; F(5,2196)¼ 22.12, Po0.001). Anticipated delay Table 1 Demographic characteristics of sample (n¼ 2208) The majority of respondents indicated that they would seek medical help in o2 weeks for most symptoms (see Table 4). Lower N % SES respondents reported less anticipated delay than higher SES respondents for each of the warning signs. Gender The relationship between anticipated delay and age was Male 968 43.8 Female 1240 56.2 examined by looking at the total number of symptoms for which respondents would wait 2 weeks or more before seeking help. The Age (years) 16 – 24 170 7.7 25 – 34 323 14.6 35 – 44 382 17.3 100 45 – 54 310 14.0 90 Men Women 55 – 64 397 18.0 65 and over 626 28.4 Marital status Married/civil partnership 984 44.6 Not married 1224 55.4 Ethnicity White 2064 93.5 Other ethnic backgrounds 144 6.5 Occupation (SES) Managerial/professional (higher SES) 744 33.7 10 Intermediate/small employers/lower supervisory (mid SES) 626 28.4 Semi-routine/routine (lower SES) 657 29.8 Not classified 181 8.2 Highest qualification obtained Degree or above 368 16.7 Below degree 791 35.8 Other 254 11.5 No formal qualifications 343 15.5 Missing data 452 20.5 Abbreviation: SES¼ socio-economic status. Figure 1 Recall of nine warning signs. British Journal of Cancer (2009) 101(S2), S18 – S23 & 2009 Cancer Research UK Lump or swelling Unexplained bleeding Unexplained pain Unexplained weight loss Change in a mole Change in bowel/bladder habits Persistent cough Sore that does not heal Difficulty swallowing % mentioning Public awareness of cancer in Britain K Robb et al S21 Table 2 Analysis of covariance for recall and recognition of the nine cancer warning signs Recall (open question) Recognition (closed question) Demographic groups Mean (95% CI) P Mean (95% CI) P Gender Male 1.64 (1.47, 1.80) 6.47 (6.25, 6.68) Female 2.20 (2.04, 2.36) F(1,2014)¼ 64.10, Po0.001 7.02 (6.82, 7.23) F(1,2015)¼ 38.41, Po0.001 Age (years) 16 – 24 1.49 (1.16, 1.83) 5.90 (5.46, 6.33) 25 – 34 1.72 (1.51, 1.93) 6.48 (6.21, 6.75) 35 – 44 1.90 (1.69, 2.10) 6.63 (6.37, 6.89) 45 – 54 2.08 (1.87, 2.30) 7.10 (6.82, 7.37) 55 – 64 2.51 (2.30, 2.72) 7.39 (7.12, 7.66) 65 and over 1.80 (1.62, 1.99) F(5,2014)¼ 13.38, Po0.001 6.97 (6.73, 7.21) F(5,2015)¼ 13.15, Po0.001 Marital status Married 2.07 (1.90, 2.24) 6.88 (6.67, 7.10) Not married 1.77 (1.60, 1.93) F(1,2014)¼ 17.49, Po0.001 6.60 (6.39, 6.81) F(1,2015)¼ 9.28, P¼ 0.002 Ethnicity White 2.21 (2.12, 2.29) 7.16 (7.06, 7.27) Other ethnic backgrounds 1.63 (1.34, 1.91) F(1,2014)¼ 14.95, Po0.001 6.32 (5.96, 6.69) F(1,2015)¼ 19.26, Po0.001 Occupation (SES) Managerial/professional (higher SES) 2.31 (2.14, 2.49) 7.13 (6.90, 7.35) Intermediate/small employers/lower supervisory (mid SES) 1.86 (1.68, 2.05) 6.70 (6.47, 6.94) Semi-routine/routine (lower SES) 1.58 (1.40, 1.76) F(2,2014)¼ 38.45, Po0.001 6.40 (6.18, 6.63) F(2,2015)¼ 22.43, Po0.001 Abbreviation: SES¼ socio-economic status. Table 3 Emotional, practical and service barriers to seeking medical help (% endorsing each) by socio-economic group (indexed by occupational category) All (n¼ 2208) Lower SES (n¼ 662) Mid SES (n¼ 627) Higher SES (n¼ 746) Significance Emotional barriers Worried what doctor might find 36.5 (807) 44.1 (283) 35.2 (217) 33.2 (243) w (1, 1989)¼ 17.08, Po0.001 Too scared 24.8 (547) 26.4 (168) 25.7 (158) 23.3 (169) w (1, 1977)¼ 1.82, P¼ 0.177 Too embarrassed 20.5 (452) 25.5 (164) 19.4 (119) 15.6 (115) w (1, 1993)¼ 20.74, Po0.001 Not confident to talk about symptom 11.8 (260) 13.9 (89) 10.7 (66) 10.1 (74) w (1, 1992)¼ 4.77, P¼ 0.029 Practical barriers Too busy 28.4 (626) 19.6 (127) 26.9 (167) 38.3 (282) w (1, 2005)¼ 59.0, Po0.001 Other things to worry about 21.7 (480) 17.6 (113) 21.7 (134) 26.4 (194) w (1, 1996)¼ 15.34, Po0.001 Difficult to arrange transport 4.7 (103) 6.6 (43) 4.8 (30) 2.8 (21) w (1, 2010)¼ 11.13, P¼ 0.001 Service barriers Difficult to make appointment 40.7 (899) 41.6 (266) 40.7 (251) 43.3 (315) w (1, 1983)¼ .41, P¼ 0.522 Worried about wasting doctor’s time 38.1 (842) 39.4 (251) 42.7 (265) 36.4 (269) w (1, 1995)¼ 1.44, P¼ 0.229 Difficult to talk to doctor 13.4 (296) 14.5 (90) 14.2 (86) 12.5 (89) w (1, 1938)¼ 1.15, P¼ 0.283 Abbreviation: SES¼ socio-economic status. Table 4 Percentage saying that they would contact the doctor in o2 weeks for each warning sign by socio-economic group (indexed by occupational category) Lower SES (n¼ 662) Mid SES (n¼ 627) Higher SES (n¼ 746) Significance Warning signs % (n) Unexplained bleeding 95.3 (614) 91.9 (564) 92.0 (674) w (1, 1991)¼ 5.82, P¼ 0.016 Difficulty swallowing 85.6 (545) 79.2 (488) 73.8 (542) w (1, 1987)¼ 28.41, Po0.001 Lump or swelling 83.4 (534) 76.6 (472) 73.0 (534) w (1, 1988)¼ 21.26, Po0.001 Change in appearance of a mole 82.8 (519) 74.2 (451) 71.2 (521) w (1, 1967)¼ 24.24, Po0.001 Unexplained pain 78.5 (499) 71.5 (434) 67.5 (487) w (1, 1965)¼ 20.24, Po0.001 Sore that does not heal 70.2 (447) 57.8 (354) 54.1 (394) w (1, 1977)¼ 35.84, Po0.001 Change in bowel/bladder habits 70.7 (451) 59.2 (362) 50.6 (371) w (1, 1982)¼ 56.87, Po0.001 Cough or hoarseness 56.3 (359) 45.4 (278) 37.5 (275) w (1, 1984)¼ 48.32, Po0.001 Unexplained weight loss 50.8 (318) 34.1 (207) 27.4 (200) w (1, 1963)¼ 77.73, Po0.001 Abbreviation: SES¼ socio-economic status. & 2009 Cancer Research UK British Journal of Cancer (2009) 101(S2), S18 – S23 Public awareness of cancer in Britain K Robb et al S22 youngest age group and the oldest group reported the lowest consistent with the observation that some reported barriers to help anticipated delay (16–24 years: 3.90 2.71 and 65þ years: seeking were lower in these groups. While these results are 3.77 2.67), with the age groups in between reporting greater encouraging both in terms of general help-seeking behaviour and ± ± anticipated delay (25–34: 4.46 2.64, 35–44: 4.48 2.73, 45–54: inequalities, they are severely limited by their hypothetical nature. ± ± 4.33 2.78, 55–64: 4.01 2.69; F(5,2207)¼ 5.22, Po0.001). The gap between good intentions and behaviour is well recognised in the psychological literature (Sheeran, 2002), and actual help seeking is likely to be less prompt than hypothetical intentions. Associations between awareness, perceived barriers and Being worried about what the doctor might find was the most anticipated delay commonly endorsed emotional barrier to prompt help seeking, which is in line with previous work citing fear and fatalism as In an ANCOVA, including the number of warning signs identified barriers to cancer-protective behaviours (Powe, 1995; Aro et al, and the number of barriers endorsed, perceiving more barriers to 2001; Lostao et al, 2001; Subramanian et al, 2004). But it was also help seeking was associated with greater anticipated delay notable that almost 40% of people felt that concern about ‘wasting (F(1,2008)¼ 91.70, Po0.001). Recall (open question) was not the doctor’s time’ could make them delay presentation. This associated with anticipated delay, but recognising more symptoms suggests that some people may not feel confident that their was associated with lower anticipated delay independently of symptom needs medical attention or perceive their doctor as too gender, age, ethnicity, occupation and perceived barriers busy to be bothered with their concerns. Either way, it should be (F(1,2008)¼ 4.93, Po0.02). Significant independent effects were possible to address this issue through primary care initiatives that maintained for gender (women: adjusted mean¼ 3.58 0.13, men: empower people to believe their symptom is important and 3.97 0.14; F(1,2008)¼ 11.41, P¼ 0.001). Being from an ethnic deserving of medical attention. The most endorsed barrier of all ± ± minority group (ethnic minority: 3.42 0.24, white: 4.14 0.06; was ‘difficult to make an appointment,’ and this perception should F(1,2008)¼ 8.58, P¼ 0.003) or a lower SES background (lowest change as primary care services continue to improve. ± ± SES group: 3.14 0.15, highest SES group: 4.32 0.14; Recognising more warning signs was related to lower anticipated F(2,2008)¼ 36.36, Po0.001) was associated with less anticipated delay independently of SES, ethnicity, age, gender and perceived delay. barriers. This is consistent with the idea that awareness of cancer warning signs could ultimately contribute to earlier detection of cancer. In contrast, recall of cancer warning signs was not DISCUSSION associated with anticipated delay, despite having many of the In reviewing the literature we found no other study using a same demographic correlates. This has some ecological validity in validated measure to assess cancer awareness in a population- that it may be less important for people to be able to recall the nine based sample. In this British, population-based sample, recall of warning signs than to recognise a symptom as serious once they cancer warning signs using an open question was relatively poor notice it. Equally, it could relate to the question formats: both (o30%) for all symptoms except ‘lump/swelling,’ which was recognition and delay questions were presented as a series of nine mentioned by 68% of respondents. Recognition of cancer warning symptoms, which could in part explain why recognition showed signs with a closed question was much higher, with ‘mole’ and closer associations with delay than did recall. ‘lump/swelling’ being identified by over 90% of participants. Age showed significant associations with both recall and The higher levels of recognition for those two warning signs may recognition of warning signs, such that scores increased with reflect the success of breast and skin cancer awareness-raising increasing age up to 64 years. However, the oldest age group (65 campaigns (e.g. Breast Cancer Awareness Month and the SunSmart years and over) had lower recall and recognition, which is Campaign – http://www.sunsmart.org.uk). interesting and concerning, given that this group is at highest We predicted that recognition scores would be greater than risk of cancer. This finding may reflect memory loss or cognitive recall scores (Waller et al, 2004), but it is difficult to determine impairments in this group (mean age was 75 years with a range of 65–101), or could reflect their greater lifetime experience of which better captures the concept of cancer awareness. Recall underestimates awareness because it is limited by memory, while possible cancer symptoms, which have proved benign. An recognition overestimates awareness because participants find it alternative explanation might be that they have never been made easy to guess. However, recall and recognition had similar aware of the warning signs because cancer would have been correlates, both being higher in respondents who were female, discussed less when they were younger. Further work is needed to older, white and from higher SES backgrounds. Ajzen and Fishbein explore this in greater detail. (2000) argue that what is important in predicting attitudes, This study has strengths and weaknesses. One strength is the use intentions and behaviour is the salience or accessibility of of a population-based sample. Although the response rate was only beliefs, the most accessible beliefs being those that can be readily 61% and we do not know how the remaining 39% would score on brought to mind: ‘people’s attitudes follow spontaneously and cancer awareness, it is in line with other population-based consistently from beliefs accessible in memory and then guide contemporary surveys. In addition, some cases (B8%) were corresponding behavior.’ Applying their proposal to our data excluded from analyses because they could not be classified for would suggest that symptoms that are recalled in response to SES, which could bias the results. Fortunately, there were few open-ended questions are more likely to lead to help seeking than missing data on the CAM questions, and therefore responses are those that are merely recognised. However, there is a need for representative of the survey respondents, but generalisation further investigation of the ways in which different approaches to beyond British adults cannot be assumed. measuring cancer knowledge relate to behavioural outcomes, and A second strength is the use of a validated measure of cancer to determine the most useful measures for predicting early awareness, but nonetheless there is no perfect measure, and both detection behaviours. the recall and recognition questions have limitations, as discussed. Most respondents anticipated little delay in seeking medical help Relying on hypothetical questions to assess delay revealed if they noticed a cancer warning sign, saying that they would surprisingly prompt help-seeking intentions, which is likely to be contact their doctor within 2 weeks for the majority of symptoms. an overestimate compared to real-life situations with all their Lower SES and ethnic minority groups reported less anticipated uncertainties and competing priorities. However, this indicates delay, a finding inconsistent with systematic reviews showing that people are intuitively aware of the importance of prompt lower levels of education and non-white ethnicity to be associated presentation, and therefore that interventions to facilitate this with longer delay (Ramirez et al, 1999; Mitchell et al, 2008) but should fall on fertile ground. The order of the questions in the British Journal of Cancer (2009) 101(S2), S18 – S23 & 2009 Cancer Research UK Public awareness of cancer in Britain K Robb et al S23 CAM may have an impact on the findings, particularly the fact that Overall, it seems that whether cancer awareness is assessed by cancer symptoms are listed in the recognition questions before recall or recognition there is room for improvement in levels of asking about anticipated delay – this may have the effect of public awareness particularly among men, lower SES groups and priming respondents to say that they would present promptly. those from ethnic minorities. If the objectives of NAEDI are to be However, in most situations it is not pragmatically feasible to achieved, the public needs not only to be able to recall and randomise the order in which the questions are asked, and possible recognise warning signs but also to understand their potentially priming effects were considered when designing the measure. serious significance and avoid delay in seeking medical help. A A weakness of the study was that because cancer is so strongly combination of public education about symptoms, empowering related to increasing age, many respondents were at relatively low people to seek medical advice and providing positive information risk due to their young age. Thus, the results may not be fully about the value of early detection could enhance early presentation applicable to the older, most at-risk group. and improve cancer outcomes. If the CAM is used nationally and internationally, it will provide an exciting opportunity for researchers to compare levels of awareness between countries and over time. Use of the CAM ACKNOWLEDGEMENTS should aid health educators in identifying subgroups within the population with lower levels of cancer awareness. In addition, We are grateful to all the experts consulted in the development of evaluation of cancer awareness-raising campaigns will benefit from the Cancer Awareness Measure and to the Opinions Survey team at a validated measure. Further work is needed to explore the reasons the Office for National Statistics. The National Survey was funded for patient delay in presenting with cancer symptoms because by the Department of Health. measuring awareness is only the first step in beginning to understand this process. 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Journal

British Journal of Cancer – Springer Journals

Published: Dec 3, 2009

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