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Awareness of breast cancer among women

living in inner North East London

July 2010

King‟s College London Promoting Early Presentation Group

Lindsay Forbes

Louise Atkins

Amanda Ramirez

North East London Cancer Network

Frances Haste

Jennifer Layburn

BCAM Report 26th July 2010

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Executive summary

Previous work has identified that:

One year survival from breast cancer is low in North East London and this is likely to be at least partly attributable to delay in presentation with symptomatic cancer.

Poor breast cancer awareness is a risk factor for delay in presentation.

This report provides the results of large survey of breast cancer awareness in 1,515 women living in City and Hackney, Newham and Tower Hamlets

The key findings were:

o Breast cancer awareness was low in City and Hackney, Newham and Tower Hamlets.

o Asian women had lower breast cancer awareness than white women, especially in relation to knowledge of breast symptoms, reported breast checking, confidence to detect breast changes and knowledge of the NHS Breast Screening Programme. Asian women were more likely than white women to report that worry about what the doctor might find, embarrassment and lack of confidence talking about symptoms might put them off seeing the doctor. Asian women were more likely to know of the increase in risk of breast cancer with increasing age.

o Black women had lower breast cancer awareness than white women, especially in relation to knowledge of breast symptoms, reported breast checking and knowledge of the NHS Breast Screening Programme.

o White women were more likely than other ethnic groups to report that worry about wasting the doctor‟s time might put them off seeing a doctor.

o Older women were more likely than younger women to report that worry about what the doctor might find, being embarrassed or scared to go and see the doctor might put them off seeing a doctor. Older women also were more likely than younger women to report that difficulties arranging transport and worry about wasting the doctor‟s time might put them off seeing a doctor.

Interventions to promote breast cancer awareness should draw on the evidence in this survey, to address specific deficiencies in breast cancer awareness and address barriers to early presentation in particular groups. This may contribute to reducing delays in presentation in breast cancer in North East London and in turn improve survival from breast cancer.

These data may also be used as a baseline for monitoring the effect of interventions to promote breast cancer awareness.


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Contents

1. INTRODUCTION ................................................................................................................ 4

1.1. Background ............................................................................................................... 4

1.1.1. Policy context ......................................................................................................4

1.1.2. Profile of inner North East London ......................................................................5

1.1.3. Breast cancer outcomes in North East London ...................................................5

1.2. Aims .......................................................................................................................... 5

2. METHODS ......................................................................................................................... 6

2.1. Sampling ................................................................................................................... 6

2.2. Fieldwork ................................................................................................................... 6

2.3. The Breast Module of the Cancer Research UK Cancer Awareness Measure ........... 6

2.4. Analysis ..................................................................................................................... 8

3. FINDINGS ........................................................................................................................ 10

3.1. Response ................................................................................................................ 10

3.1.1. Random probability sample ............................................................................... 10

3.1.2. Total sample (including random probability sample and ethnic and age boosted samples) ....................................................................................... 10

3.2. Description of respondents ...................................................................................... 10

3.2.1. Age group ......................................................................................................... 10

3.2.2. Ethnic group, main language spoken at home and place of birth ....................... 11

3.2.3. Indicators of socioeconomic status .................................................................... 12

3.3. Previous invitations and attendances for breast screening ...................................... 13

3.4. Breast cancer awareness ........................................................................................ 13

3.4.1. Knowledge of symptoms of breast cancer ......................................................... 13

3.4.2. Frequency of breast checking ........................................................................... 15

3.4.3. Confidence to notice a change in breasts .......................................................... 18

3.4.4. Knowledge of age-related and lifetime risk ........................................................ 20

3.4.5. Breast cancer awareness score ........................................................................ 24

3.4.6. Anticipated delay in seeking help ...................................................................... 25

3.4.7. Barriers to seeking medical help ....................................................................... 25

3.4.8. Knowledge of the NHS Breast Screening Programme....................................... 27

4. DISCUSSION ................................................................................................................... 30


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1. INTRODUCTION

1.1. Background

1.1.1. Policy context

Cancer awareness is currently at the forefront of Government policy. The Cancer Reform Strategy1 highlighted the importance of raising awareness in the general population leading to the launch of the National Awareness and Early Diagnosis Initiative (NAEDI). The role of NAEDI is to coordinate a programme of activities to promote early diagnosis, including raising public awareness of the signs and symptoms of early cancer, encouraging people to seek help sooner, reducing delays in primary care, and access to diagnostics.

The ideas underlying NAEDI are that delays in diagnosis contribute to worse cancer survival and may be due to poor cancer awareness, delayed presentation by patients, poor uptake of screening, and delayed referral in primary care. Figure 1 illustrates these ideas, showing what has come to be called the NAEDI pathway. The pathway is supported by the findings that delayed diagnosis is almost certainly responsible for the differences in cancer survival between the UK and similar European countries2 for breast,3 colorectal4 and testicular cancer.5

Figure 1: The National Awareness and Early Diagnosis Pathway

Strong support for the idea that low cancer awareness may lead to delay in diagnosis comes from the consistent finding across many cancer sites that failure to recognise that symptoms are serious is associated with delay in presentation.6 Other risk factors for delay in presentation in cancer include social deprivation, older age, atypical presentation and black and minority ethnic group.6


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1.1.2. Profile of inner North East London

Inner North East London, made up of the local authority areas of the City of London, Hackney, Tower Hamlets and Newham, includes areas with some of the highest levels of deprivation in the country. Hackney is the second most deprived local authority area in England, Tower Hamlets the third, and Newham the sixth (Source: Department of Communities and Neighbourhoods, Indices of Multiple Deprivation 2007). Inner North East London has a high proportion of residents from minority ethnic populations compared with the English average: in City of London and Hackney, about 40% of the resident population is non-white, in Newham about 67% and Tower Hamlets about 50%, compared to a national level of 88% (Source: Office for National Statistics 2007).

Inner North East London has a large mobile population with a daily influx of half a million people during the week. It hosts the Port of London, City Airport, the City of London and Canary Wharf. Inner North East London is served by three Primary Care Trusts: City and Hackney, Tower Hamlets and Newham. Patient turnover on GPs lists is about 30% per year.

1.1.3. Breast cancer outcomes in North East London

Women living in North East London have worse breast cancer survival than women living in other parts of England. For the period 2000-2004, North East London had a relative five-year survival from breast cancer of 73% - the lowest in England (Source: North East London Cancer Network Breast Cancer Inequalities Project, Thames Cancer Registry). The explanation for poor breast cancer outcomes in North East London is not clear, although there is some evidence that late presentation is a significant contributor (Source: North East London Cancer Network Breast Cancer Inequalities Project, Thames Cancer Registry). There is evidence that this is largely due to more women having delayed diagnosis, rather than differences in access to treatment: most of the difference in five-year survival between North East London and other cancer networks in London is due to survival differences in the first year after diagnosis, indicating that women in North East London are more likely to have breast cancer diagnosed at a advanced stage when treatment has relatively little impact on survival (Source: North East London Cancer Network Breast Cancer Inequalities Project, Thames Cancer Registry). The relative one-year survival from breast cancer in North East London was 92% for women diagnosed 2001-5: the lowest in England.7

Breast screening coverage aged 53-70 years is low in inner North East London (54% in City and Hackney, 53% in Tower Hamlets and 56% in Newham in 2007/88). However, this is unlikely to explain poor survival, as most breast cancers are diagnosed following symptomatic presentation: about 43,000 women were diagnosed with breast cancer in 2007 in England9; the NHS Breast Screening Programme led to the diagnosis in about 14,000 of these.10

It is hypothesised that late diagnosis and poor survival in women with breast cancer in North East London may be due to low breast cancer awareness leading to both delay in presentation with symptoms and poor uptake of breast screening. Non-white ethnic group and low levels of education are known risk factors for delayed presentation.11 Women from non-white ethnic groups have been shown to have lower breast cancer awareness.12 Data on uptake of breast screening by ethnic group are less clear but there is growing evidence that women from minority ethnic groups may be less likely to take up breast screening.13

1.2. Aims

North East London Cancer Network secured NAEDI funding from the Department of Health to carry out a survey of breast cancer awareness in women living in City and Hackney, Tower Hamlets and Newham.

The aims of this survey were to:

provide a baseline against which to monitor trends in breast cancer awareness and the effect of interventions to promote breast cancer awareness

identify where interventions to promote breast cancer awareness might be most appropriately focused.


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2. METHODS

North East London Cancer Network commissioned STRC-Research (Ethnic Focus) to carry out a survey of breast cancer awareness in women aged 30 and over in the City of London and the London Boroughs of Hackney, Tower Hamlets, and Newham, using the Breast Module of the Cancer Research UK Cancer Awareness Measure.

2.1. Sampling

Using the Postal Address File as a sampling frame, Ethnic Focus selected addresses using random probability sampling from addresses in lower superoutput areas in the four local authority areas stratified by deprivation level, as defined by Index of Multiple Deprivation 2007 (Source: Department of Communities and Neighbourhoods, Indices of Multiple Deprivation 2007). This was intended to generate a representative sample across a range of deprivation levels. A total of 1465 addresses were identified using this method. We will refer to this as the random probability sample.

Within 50% of the selected lower superoutput areas, Ethnic Focus randomly sampled and visited 612 additional addresses to achieve a higher proportion of women belonging to non-white ethnic groups and women over the age of 55, as it was thought that these groups might be underrepresented in a random probability sample.

2.2. Fieldwork

Fieldwork was carried out from November 2009 to January 2010. At each responding household, the interviewer asked about household composition and identified the questionnaire respondent from among all women aged 30 and over living in that household using a Kish grid. The identified woman was invited to complete the Breast Cancer Awareness Measure using a face-to-face, computer-assisted interview. Only one woman per household was asked to complete the interview questionnaire. Where possible, interviews were conducted in the preferred language of the respondent.

2.3. The Breast Module of the Cancer Research UK Cancer Awareness Measure

The Breast Module of the Cancer Research UK Cancer Awareness Measure was developed by Cancer Research UK, King‟s College London and University College London in 2009. It was validated with the support of Breast Cancer Care and Breakthrough Breast Cancer,14 and it has been used in other studies.15 16 This is the first time it has been used in a population-based survey.

The Breast Module may be delivered by interview or self-complete questionnaire, and is made up of seven domains:

Knowledge of symptoms of breast cancer

Confidence, skills and behaviour in relation to detecting a breast change

Anticipated delay in contacting the doctor on discovering a symptom

Barriers to seeking medical help

Knowledge of age-related and lifetime risk of breast cancer

Knowledge of the NHS Breast Screening Programme

In North East London, the Breast Module was delivered by interview. The interview schedule is shown in Appendix 1.


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Knowledge of symptoms

This question is an open question asking women how many early warning signs of breast cancer they can think of, without specific prompting.

Following this, there is a series of closed questions about the early warning signs of breast cancer. The interviewer may provide further explanation for three of the questions as shown below, if the woman says she does not understand what the interviewer means by the question.

Closed symptom questions

Do you think a change in the position of your nipple could be a sign of breast cancer?

[Explanation]: such as pointing up or down or in a different direction to normal

Do you think pulling in of your nipple could be a sign of breast cancer?

[Explanation]: where the nipple no longer points outwards but into the breast

Do you think pain in one of your breasts or armpit could be a sign of breast cancer?

Do you think puckering or dimpling of your breast skin could be a sign of breast cancer? [Explanation]: like a dent or orange peel appearance

Do you think discharge or bleeding from your nipple could be a sign of breast cancer?

Do you think a lump or thickening in your breast could be a sign of breast cancer?

Do you think a nipple rash could be a sign of breast cancer?

Do you think redness of your breast skin could be a sign of breast cancer?

Do you think a lump or thickening under your armpit could be a sign of breast cancer?

Do you think changes in the size of your breast or nipple could be signs of breast cancer?

Do you think changes in the shape of your breast or nipple could be signs of breast cancer?

The correct answers are that all can be signs of breast cancer.

Confidence, skills and behaviour in relation to detecting a breast change

The first question in this domain asks about frequency of breast checking, the second about confidence to detect a breast change and the third asks about reporting a breast change to a doctor.

How often do you check your breasts? Rarely or never/At least once every 6 months/At least once a month/At least once a week

Are you confident you would notice a change in your breasts? Not at all confident/Slightly confident/Fairly confident/Very confident

Have you ever been to see a doctor about a change you have noticed in one of your breasts? Yes/No/Not noticed a change in one of my breasts

Anticipated delay in contacting the doctor

This question aims to find out how long women think they will delay before seeking medical help after discovering a breast change.

If you found a change in your breasts, how soon would you contact your doctor? 1-3 days/ 4-6 days/1 week/2 weeks/1 month/6 weeks/3 months/6 months/12 months/Never

Barriers to seeking medical help

These questions aim to find out which barriers women experience when seeking medical help with breast symptoms. They are asked to answer „yes, often‟, „yes, sometimes‟ or „no‟ to each statement.

Sometimes people put off going to see the doctor, even when they have a symptom that they think might be serious. These are some of the reasons people give for delaying. Could you say if any of these might put you off going to the doctor?

Service barriers o Worried about wasting the doctor‟s time


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o I find the doctor difficult to talk to o Difficult to make an appointment with the doctor

Practical barriers o Too busy to make time to go to the doctor o Too many other things to worry about o Difficult to arrange transport to the doctor‟s surgery

Emotional barriers

o Too embarrassed to go and see the doctor o Too scared to go and see the doctor o Not feeling confident talking about my symptom with the doctor o Worrying about what the doctor might find may stop me from going to the

doctor

Knowledge of age-related and lifetime risk

These questions aim to find out whether women know that the risk of breast cancer increases with age, and the overall lifetime risk of developing breast cancer.

In the next year, who is most likely to get breast cancer? A 30 year old woman/A 50 year old woman/A 70 year old woman/A woman of any age

The correct answer to this question is „a 70 year old woman‟.

How many women will develop breast cancer in their lifetime? 1 in 3 women/1 in 9 women/1 in 100 women/1 in 1000 women

The correct answer is that about 1 in 9 women will develop breast cancer during their lifetime.

Knowledge of the NHS Breast Screening Programme

These questions aim to assess women‟s knowledge of the NHS Breast Screening Programme and whether they have had mammograms on the NHS Breast Screening Programme.

Is there an NHS Breast Screening Programme?

If yes

At what age are women first invited to the NHS Breast Screening Programme?

At what age do women receive their last invitation to the NHS Breast Screening Programme?

Women are invited for breast screening between the ages of 50 and 70 and are offered mammograms every three years. From 2009, this age range began to be extended from 47-49 and 71-73 but this will not be complete across England until 2012. Currently women over 70 can refer themselves for breast screening every three years by contacting their local breast screening unit.

2.4. Analysis

Women who reported that they were of mixed white and black African or black Caribbean ethnic group were classified as black (other). Women who reported that they were of mixed white and Asian ethnic group were classified as Asian (other). Any women who reported that they were of other mixed ethnic group were classified as Other ethnic group.

Using postcode, we assigned Index of Multiple Deprivation 2007 of lower superoutput area of residence (IMD). We assigned quintile of deprivation based on IMD distribution of lower superoutput areas of inner North East London (in other words, City of London, Hackney, Newham and Tower Hamlets). The least deprived quintile of the five was labelled 1 and the most deprived labelled 5.

We compared the characteristics of both the random probability sample and the total sample with Greater London Authority (GLA) population estimates 2006 and Census data 2001.


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For most analyses, we presented percentage responses to each question for both the random probability sample and the total sample separately. This is because, while the random probability sample was a random probability sample, the total sample included people who were not selected by this method.

We calculated weighted percentage responses to each question with 95% confidence intervals (CI) for the total sample using the Stata svy command, because it was not a random probability sample. This adjusts the observed percentage for the inverse of the probability of being selected, based on the proportions of women aged 30+ of a particular age group and ethnic group estimated to be resident in the local authority area based on GLA 2006 population estimates. For example, if x% of the population of Newham was Bangladeshi and aged 65+, but y% of the sample population of Newham was Bangladeshi and aged 65+, the weighted percentage was equal to x multiplied by y/x (in other words, the inverse of x/y which is the estimated probability of selection).

We calculated proportions giving each answer to questions relating to recognition of symptoms, knowledge of increase in risk of breast cancer with age, and reported breast checking, and a composite breast cancer awareness score.14 To achieve breast cancer awareness, a woman had to correctly identify five or more non-lump symptoms of breast cancer, know that a woman of 70 years old is at greater risk of developing breast cancer than a 30 or 50 year old women and report checking her breasts at least once a month.

We examined the associations between each element of breast cancer awareness and ethnic group, age group, quintile of deprivation and the individual-level measures of socioeconomic status (age at leaving full time education, housing tenure and main source of household income).

We examined the associations between breast cancer awareness variables and ethnic group, age group and quintile of deprivation using logistic regression. We adjusted the associations for the other variables, to control for the fact that observed differences in breast cancer awareness between any of these groups may be due to the effect of one of the other factors, if these are clustered together (a phenomenon known as confounding). For example, it is likely that, on average, ethnic minority people have higher levels of deprivation; it important to attempt to unpick the extent to which poor breast cancer awareness in people from ethnic minorities is due to being more deprived. The odds ratios (OR) that these analyses generate provide an estimate of the odds of giving a particular answer in one group over the odds of giving a particular answer in a baseline group.

All statistical analyses were carried out in Stata version 10.


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3. FINDINGS

3.1. Response

3.1.1. Random probability sample

Of the 1,465 addresses approached, 168 were ineligible, either because they were not private households or because no women aged 30 or older lived there. In the remaining 1297 households, 1,061 (82%) women aged 30 or older (one in each household) agreed to take part and completed the questionnaire.

3.1.2. Total sample (including random probability sample and ethnic and age boosted samples)

Of the 2,077 addresses approached, 214 were ineligible, either because they were not private households or because no women aged 30 or older lived there. In the remaining 1863 households, 1,516 (81%) women aged 30 or older (one in each household) agreed to take part and completed the questionnaire. However, data were missing on one woman, so the total number with data was 1,515.

3.2. Description of respondents

Table 1 shows the numbers of women responding in each of the local authority areas. Approximately equal numbers of women responded from each of the three areas.

Four per cent of respondents reported that they had had breast cancer and 21% that they had ever been to see a doctor about a change they had noticed in their breasts. Ninety eight per cent of both the random probability sample and the total sample reported that they were registered with a GP. Eighty per cent of interviews were conducted in English. The most commonly used other languages were Sylheti (49), Urdu (41), Polish (36), Mandarin (30), Punjabi (26), and Somali (25).

3.2.1. Age group

Table 2 shows the age distribution of respondents to the survey and provides 2006 GLA population estimates for comparison. This suggests that the sample underrepresented women aged 30 to 44, and 65 and older, and overrepresented women aged 45 to 64.

Table 1: Area of residence

Random probability sample

Ethnic boost sample

Age boost sample

Total sample

n (%) n (%) n (%) n (%)

Tower Hamlets 325 (30.6) 79 (28.9) 64 (35.4) 468 (30.9)

Newham 397 (37.4) 114 (41.8) 61 (33.7) 572 (37.8)

City of London and Hackney 339 (32.0) 80 (29.3) 56 (30.9) 475 (31.4)

Total 1,061 (100.0) 273 (100.0) 181 (100.0) 1,515 (100.0)

Table 2: Age group


Ethnic boost sample

Age boost sample

Total sample Population estimates (women aged 30+)*

n (%) n (%) n (%) n (%) n (%)

30-44 578 (54.5) 151 (55.3) 2 (1.1) 731 (48.3) 112,543 (61.8)

45-64 393 (37.0) 96 (35.2) 117 (64.6) 606 (40.0) 37,775 (20.7)

65+ 79 (7.5) 23 (8.4) 62 (34.3) 164 (10.8) 31,897 (17.5)

Refused 11 (1.0) 3 (1.1) 0 (0.0) 14 (0.9) Not applicable

Total 1,061 (100.0) 273 (100.0) 181 (100.0) 1,515 (100.0) 182,215 (100.0)

*Source: Greater London Authority 2006


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3.2.2. Ethnic group, main language spoken at home and place of birth

Table 3 shows the ethnic distribution of respondents to the survey and 2006 GLA population estimates for comparison. This suggests that the random probability sample overrepresented white women and underrepresented the other ethnic groups. The total sample showed a broad ethnic distribution that was fairly similar to GLA estimates. Table 4 shows the main languages spoken at home of the respondents to the random probability sample and the total sample. Sixty eight per cent of the total sample mainly spoke English at home.

Among the white women, 696 (86%) described themselves as white British and 7 (1%) as white Irish. Of the 333 Asian women in the total sample, 95 (29%) described themselves as Indian, 76 (23%) Pakistani, and 113 (34%) Bangladeshi. The remaining 49 described themselves as of other Asian ethnic group or mixed. Seventy seven (23% of the Asian women) said they mainly spoke Sylheti at home, 54 (15%) Gujarati, 53 (16%) Urdu, 47 (14%) English, 46 (14%) Punjabi and 32 (10%) Bengali. Of the 265 black women, 134 (51%) described themselves as black African, 92 (34%) as black Caribbean and the remaining 39 as mixed or other. Of the black African women, 82 (61%) spoke English at home. Of the remaining 52, 26 (50%) spoke Somali at home, 9 (21%) French and 9 (21%) Yoruba. All the black Caribbean women spoke English at home. Forty eight women described their ethnic group as Chinese.

Five hundred and forty six (36%) respondents reported that they had not been born in the UK. This is a similar proportion to that found in the Census 2001 for males and females all ages living in City of London, Newham, Hackney and Tower Hamlets (36%).

Table 3: Ethnic group


Ethnic boost sample

Age boost sample

Total sample Population estimates (women aged 30+)*

n (%) n (%) n (%) n (%) n (%)

White 674 (63.5) 18 (6.6) 114 (63.0) 806 (53.2) 96,070 (52.7)

Asian 188 (17.7) 110 (40.3) 35 (19.3) 333 (22.0) 36,765 (20.2)

Black 117 (11.0) 121 (44.3) 27 (14.9) 265 (17.5) 39,509 (21.7)

Other 78 (7.4) 23 (8.4) 5 (2.8) 106 (7.0) 9,871 (5.4)

Refused 4 (0.4) 1 (0.4) 0 (0.0) 5 (0.3) Not applicable

Total 1,061 (100.0) 273 (100.0) 181 (100.0) 1,515 (100.0) 182,215 (100.0)

*Source: Greater London Authority 2006

Table 4: Main language spoken at home

Random probability

sample Total sample

n (%) n (%)

English 760 (71.6) 1,034 (68.3)

Sylheti 50 (4.7) 77 (5.1)

Urdu 31 (2.9) 54 (3.6)

Gujarati 28 (2.6) 54 (3.6)

Punjabi 27 (2.5) 46 (3.0)

Chinese 33 (3.1) 40 (2.6)

Bengali 17 (1.6) 32 (2.1)

Other European 48 (4.5) 66 (4.4)

Other South Asian 7 (0.7) 23 (1.5)

Other 60 (5.7) 89 (5.9)

Total 1,061 (100.0) 1,515 (100.0)


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3.2.3. Indicators of socioeconomic status

Table 5 shows the housing tenure and car access of respondents and estimates from Census 2001. Data from Census 2001 are now nearly ten years old, and relate to the whole population, not just women aged 30+, and it is recognised that the patterns of tenancy have changed over that period. This means that these data provide only limited evidence of the representativeness of the sample; however, they suggest that the sampling strategy may have led to overrepresentation of women living in private rented accommodation and underrepresentation of women living in social housing and with no access to a car or van.

Table 6 shows quintile of deprivation of lower superoutput area defined by IMD scores of inner North East London. The proportion in each quintile is close to 20%, suggesting that the samples were reasonably representative of the population of inner North East London, except for slightly overrepresenting women living in the least deprived areas and slightly underrepresenting women living in the 3rd and 4th quintiles of deprivation.

Table 7 shows the main source of household income for the respondents. Around 60% of women lived in households where the main income came from wages or salary. About 48% of the random probability sample and 43% of the total sample had been educated to at least the age of 17 (data not shown).

Table 5: Household tenure and access to a car


Total sample Estimates from Census 2001*

n (%) n (%) n (%)

Own outright or have a mortgage 401 (37.8) 594 (39.2) 88,897 (37.5)

Rent from Council/Housing Association 234 (22.1) 363 (24.0) 119,348 (45.8)

Rent from private landlord 361 (34.0) 472 (31.2) 41,153 (15.8)

Tenure: Other/refused/don‟t know 65 (6.1) 86 (5.7) Not applicable

No household access to car or van 478 (45.0) 693 (45.7) 140,358 (53.8)

*Source: Neighbourhood Statistics, Census 2001; denominator is number of households

Table 6: Index of Multiple Deprivation 2007 of lower superoutput area of residence


Total sample

Quintile of deprivation n (%) n (%)

1 (least deprived) 243 (22.9) 384 (25.4)

2 237 (22.3) 299 (19.7)

3 181 (17.1) 236 (15.6)

4 180 (17.0) 278 (18.4)

5 (most deprived) 215 (20.3) 313 (20.7)

Not available 5 (0.5) 5 (0.3)

Table 7: Main source of household income


Total sample

n (%) n (%)

Wages or salary 657 (61.9) 925 (61.1)

Pension 131 (12.4) 214 (14.1)

Benefits 151 (14.2) 211 (13.9)

Other 20 (1.9) 25 (1.7)

Refused 63 (5.9) 83 (5.5)

Don‟t know 39 (3.7) 57 (2.4)


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3.3. Previous invitations and attendances for breast screening

We had data only on 5-year age group of respondents, not age in years, so we estimated proportions who had been invited and who had attended for breast screening in women aged 55 and older only, rather than 53 and older. Four hundred and thirty eight of the participating women were aged 55 or older. One hundred and sixty two (37%) of these reported that they had ever received an invitation for breast screening, and 110 (25%) that they had ever attended for breast screening.

3.4. Breast cancer awareness

3.4.1. Knowledge of symptoms of breast cancer

Figure 2 shows the proportions of respondents who recalled different symptoms of breast cancer after being asked: “Please would you name as many early warning signs of breast cancer as you can think of” and who recognised those of breast cancer from a list of symptoms. Lump in breast and pain in breasts or armpit were most frequently recalled and recognised, with all other symptoms being infrequently recalled or recognised.

The proportion (weighted for age and ethnic distribution) of the total sample recognising five or more non-lump symptoms was 18%.

Figure 3 shows percentages of women recognising five or more non-lump symptoms in each of the participating local authority areas and by ethnic group, age group and quintile of deprivation.

Local authority

The proportion recognising five or more non-lump symptoms was lowest in Newham and highest in City and Hackney. The differences were not statistically significant.

Figure 2. Percentages recalling and recognising breast cancer symptoms (total sample)

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Recall

Recognition

Table 8 in Appendix 2 provides the data on recall and recognition of symptoms in table form for the random probability sample and the total sample, both unweighted and weighted, with 95% confidence intervals around the estimates.


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Figure 3. Percentages of women recognising five or more non-lump symptoms by local authority area, ethnic group, age group and quintile of deprivation (total sample)

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Ethnic group

Women belonging to Asian ethnic groups were very much less likely to recognise five or more non-lump symptoms than white women (11% versus 22%), and this was highly statistically significant and was not changed by controlling for age and quintile of deprivation, suggesting that this was not due to Asian women being younger or living in more deprived areas (adjusted OR 0.36, 95% CI 0.21 to 0.61). Women belonging to black ethnic groups were also less likely to recognise five or more non-lump symptoms than white women (11% versus 22%) and this was also statistically significant. Again, this did not appear to be due to age or deprivation (adjusted OR 0.61, 95% CI 0.40 to 0.94). The adjusted odds ratios and 95% CI for the association between recognising five or more non-lump symptoms and ethnic group are shown in Figure 4.

The proportions in each Asian and black ethnic subgroup who recognised five or more non-lump symptoms were Indian (11%), Pakistani (6%), Bangladeshi (9%), other Asian (15%), black Caribbean (17%) and black African (14%).

Adjusting the association between Asian ethnic group and recognising five or more non-lump symptoms for level of education only slightly reduced its magnitude (adjusted OR 0.40, 95% CI 0.23 to 0.70). This suggests that the Asian women‟s lower knowledge of non-lump symptoms is not due to having lower levels of education.

Age

While older women were more likely to recognise five or more non-lump symptoms, this was not statistically significant. The adjusted odds ratios and 95% CI for the association between recognising five or more non-lump symptoms and age group are shown in Figure 4.

Deprivation

There was some evidence that living in a more deprived area was associated with greater recognition of five or more non-lump symptoms. The adjusted odds ratios and 95% CI for the association between recognising five or more non-lump symptoms and quintile of deprivation are shown in Figure 4. We found no association between housing tenure, educational level or source of household income and ability to recognise five or more non-lump symptoms (data not shown).


15

Figure 4. Associations between recognising five or more non-lump symptoms and ethnic group, age and deprivation

By ethnic group

(Odds ratios for recognising five or more non-lump symptoms adjusted for age group and quintile of deprivation. Baseline white ethnic group)

By age

(Odds ratios for recognising five or more non-lump symptoms adjusted for ethnic group and quintile of deprivation. Baseline age 30-44)

By quintile of deprivation

(Odds ratios for recognising five or more non-lump symptoms adjusted for age group and ethnic group. Baseline highest quintile (least deprived))

See Table 9 in Appendix 2 for the percentages recognising five or more non-lump symptoms of breast cancer from the list in table form, by local authority area, ethnic group, age group and quintile of deprivation, for the random probability sample and total sample, with odds ratios and 95% CI for the differences between groups, unadjusted and adjusted for other variables.


16

3.4.2. Frequency of breast checking

Figure 5 shows the percentages of the 1450 women who answered the question “How often do you check your breasts?” who reported checking their breasts at least once a month, for the total sample, for each of the participating local authority areas and by ethnic group, age group and quintile of deprivation. About 23% reported checking their breasts at least once a month.

Local authority

The proportion reporting checking their breasts at least once a month was lowest in Newham. The differences in the percentages between the local authority areas were not statistically significant either before or after adjusting for age group, ethnic group or quintile of deprivation.

Ethnic group

Asian and black women were less likely than white women to report checking their breasts at least once a month (16% versus 19% versus 26%). The differences in percentages reporting checking their breasts between white and Asian women and white and black women were highly statistically significant and were not changed much by controlling for age and quintile of deprivation, suggesting that this was not due to ethnic minority women being younger or living in more deprived areas (Asian women: adjusted OR 0.38, 95% CI 0.24 to 0.62; black women: adjusted OR 0.55 (95% CI 0.37 to 0.84). The adjusted odds ratios and 95% for the associations between reporting breast checking at least once a month and ethnic group are shown in Figure 6.

The proportions in each Asian and black ethnic subgroup who reported breast checking at least once a month were Indian (14%), Pakistani (11%), Bangladeshi (9%), other Asian (26%), black Caribbean (22%) and black African (15%).

Figure 5. Percentages reporting checking their breast at least once a month by local authority area, ethnic group, age group and quintile of deprivation (total sample)

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10

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30

40

Total sam

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17

Figure 6. Associations between reporting checking breasts at least once a month and ethnic group, age and deprivation

Ethnic group

(Odds ratios for reporting checking breasts at least once a month adjusted for age group and quintile of deprivation. Baseline white ethnic group)

By age group

(Odds ratios for reporting checking breasts at least once a month adjusted for ethnic group and quintile of deprivation. Baseline age 30-44)


(Odds ratios for reporting checking breasts at least once a month adjusted for age group and ethnic group. Baseline highest quintile (least deprived))

See Table 10 for the percentages of women reporting that they checked their breasts at least once a month in table form, by local authority area, ethnic group, age group and quintile of deprivation, for the random probability and total sample, and odds ratios and 95% CI for the differences between groups, unadjusted and adjusted for other variables.


18

Age

Women aged 45 to 64 were more likely to check their breasts at least once a month than women under the age of 45 after adjusting for ethnic group and deprivation. Women aged 65 and older were more likely to report checking their breasts at least once a month than women under 45, but this was not statistically significant after adjusting for ethnic group and deprivation. The adjusted odds ratios and 95% for the associations between reporting breast checking at least once a month and age group are shown in Figure 6.

Deprivation

Women living in the least deprived areas were most likely to check their breasts at least once a month. The adjusted odds ratios and 95% for the associations between reporting breast checking at least once a month and quintile of deprivation are shown in Figure 6. We found no associations between frequency of breast checking and individual-level indicators of socioeconomic deprivation (age at leaving education, main household income source and housing tenure) (data not shown).

3.4.3. Confidence to notice a change in breasts

Figure 7 shows the percentages reporting that they were fairly or very confident to notice a change in their breasts for the total sample and by local authority area, ethnic group, age group and quintile of deprivation. Overall, about half of the 1,390 women who answered the question “Are confident you would notice a change in your breasts?” reported that they were fairly or very confident that they would notice a change.

Local authority area

The proportion of women reporting that they were fairly or very confident to notice a change in their breasts was lowest in Newham and highest in City and Hackney. These differences were not statistically significant.

Figure 7. Percentages reporting being fairly or very confident to notice a change in their breasts by local authority area, ethnic group, age group and quintile of deprivation (total sample)

0

10

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30

40

50

60

70

80

90

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Total sam

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Asian

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19

Ethnic group

Both Asian and black women were less likely than white women to be confident to notice a breast change (45% versus 48% versus 58%), but this was only statistically significant for Asian women. The adjusted odds ratios and 95% CI for the associations between being fairly or very confident to notice a change in breasts and ethnic group are shown in Figure 8.

The proportions in each Asian and black ethnic subgroup who reported that they were confident to notice a breast change were Indian (53%), Pakistani (54%), Bangladeshi (42%), other Asian (50%), black Caribbean (54%) and black African (49%).

Age

There was a trend towards lower confidence to notice a breast change with increasing age. Women over the age of 65 were less likely to be confident to notice a breast change than women aged 30 to 44, and this remained statistically significant after controlling for other variables. The adjusted odds ratios and 95% CI for the associations between being fairly or very confident to notice a change in breasts and age group are shown in Figure 8.

Deprivation

There were no clear trends by quintile of deprivation. The adjusted odds ratios and 95% CI for the associations between being fairly or very confident to notice a change in breasts and quintile of deprivation are shown in Figure 8. We found no associations with housing tenure (data not shown). We found some evidence that women whose main household income came from pension or benefits were less likely to report that they were confident to notice a change in their breasts than women whose main household income came from wages or salary (weighted %: 45% versus 56%; adjusted OR 0.61, 95% CI 0.45 to 0.82). We found that women who had been educated to age 17 or older were more likely to be confident to notice a breast change than women who had been educated to 16 or younger (weighted %: 56% versus 49%; adjusted OR 1.32, 95% CI 1.02 to 1.78).

Figure 8. Association between reporting fairly or very confident to notice a change in breasts and ethnic group, age group and quintile of deprivation

Ethnic group

(Odds ratios for being fairly or very confident to notice a change in breasts adjusted for age group and quintile of deprivation. Baseline white ethnic group)


20

By age group

(Odds ratios for being fairly or very confident to notice a change in breasts adjusted for ethnic group and quintile of deprivation. Baseline age 30-44)


(Odds ratios for being fairly or very confident to notice a change in breasts adjusted for age group and ethnic group. Baseline highest quintile (least deprived))

See Table 11 in Appendix 2 for the percentages of women reporting that they were fairly or very confident that they would notice a change in their breasts, in table form, by local authority area, ethnic group, age group and quintile of deprivation, and odds ratios and 95% CI for the differences between groups, unadjusted and adjusted for other variables.

3.4.4. Knowledge of age-related and lifetime risk

Age-related risk

Women were asked who was most likely to get breast cancer in the next year: a 30 year old woman, a 50 year old woman, a 70 year old woman, or a woman of any age. Figure 9 shows the percentages giving the correct answer (70 year old woman) for the total sample by local authority area, ethnic group, age group and quintile of deprivation. Overall, 14% of respondents correctly identified a 70 year old woman as at greatest risk. Forty one per cent of women responded „a woman of any age‟, suggesting that they believed breast cancer incidence to be unrelated to age. Twenty per cent thought that a 50 year old and 7% that a 30 year old was at greatest risk. Eighteen per cent said they did not know.


21

Figure 9. Percentages correctly identifying a 70 year old woman as at greatest risk by local authority area, ethnic group, age group and quintile of deprivation (total sample)

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30

40

Total sam

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Tower

Ham

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City

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White

Asian

Black

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to 4

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Age

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Age

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Weighted %


Women in City and Hackney were least likely to answer the question about age-related risk correctly, but the differences between the local authority areas were not statistically significant.

Ethnic group

Asian women were more likely than white women to correctly identify a 70 year old woman as at greatest risk (23% versus 11%). There were no other significant differences between the ethnic groups in knowledge of age-related risk. The adjusted odds ratios and 95% CI for correctly identifying a 70 year old by ethnic group are shown in figure 10.

The proportions in each Asian and black ethnic subgroup correctly identifying a 70 year old woman as at greatest risk were Indian (31%), Pakistani (18%), Bangladeshi (19%), other Asian (16%), black Caribbean (13%) and black African (13%). It appears that all the Asian groups had better awareness of the increase in risk of breast cancer with increasing age than white women, particularly Indian women.

Age

Women aged 65+ were significantly more likely to correctly identify a 70 year old woman as at greatest risk of breast cancer than women aged (22%). This difference persisted – in fact, grew stronger – after controlling for ethnic group and quintile of deprivation. The adjusted odds ratios and 95% CI for correctly identifying a 70 year old by age group are shown in figure 10.

Deprivation

There were no clear patterns by quintile of deprivation. The adjusted odds ratios and 95% CI for correctly identifying a 70 year old by quintile of deprivation are shown in figure 10. Women who had been educated to aged 17 or older were more likely to correctly identify a 70 year old woman as at greatest risk than women who had been educated to age 16 or younger (weighted %: 16% versus 11%; OR 0.89, 95% CI 0.86 to 0.91). There were no associations with housing tenure or household source of income (data not shown).


22

Figure 10. Associations between correctly identifying a 70 year old as at greatest risk and ethnic group, age group and quintile of deprivation

By ethnic group

(Odds ratios for correctly identifying a 70 year old as at greatest risk adjusted for age group and quintile of deprivation. Baseline white ethnic group)

By age group

(Odds ratios for correctly identifying a 70 year old as at greatest risk adjusted for ethnic group and quintile of deprivation. Baseline age 30-44)


(Odds ratios for correctly identifying a 70 year old as at greatest risk adjusted for age group and ethnic group. Baseline highest quintile (least deprived)

See Table 12 in Appendix 2 for the percentages of women answering this question correctly in table form, for the random probability and total sample, by local authority area, ethnic group, age group and quintile of deprivation, and odds ratios and 95% CI for differences between the groups unadjusted and adjusted for other variables.


23

Lifetime risk

Respondents were asked how many women would develop breast cancer in their lifetime: 1 in 3; 1 in 9; 1 in 100; or 1 in 100. Figure 11 shows the percentages answering this question correctly (1 in 9) for the total sample by local authority area, ethnic group, age group and quintile of deprivation. Overall, 40% of respondents correctly answered 1 in 9. Twenty one per cent gave the answer 1 in 100, 12% 1 in 3, 3% 1 in 1000 and 23% said they did not know.


Women in City and Hackney were least likely to answer the question about lifetime risk correctly, but the differences between the local authority areas were not statistically significant.

Ethnic group

Asian women were less likely than white women to answer 1 in 9 correctly (33% versus 46%). There were no other significant differences between the broad ethnic groups in knowledge of lifetime risk. The adjusted odds ratios and 95% CI for correctly answering 1 in 9 by ethnic group are shown in Figure 12.

The proportions in each Asian and black ethnic subgroup correctly answering 1 in 9 were Indian (29%), Pakistani (38%), Bangladeshi (27%), other Asian (80%), black Caribbean (46%) and black African (38%).

Age

Older women were significantly less likely than younger women to answer the question about lifetime risk correctly. This difference persisted after controlling for ethnic group and quintile of deprivation. The adjusted odds ratios and 95% CI for correctly answering 1 in 9 by age group are shown in Figure 12.

Figure 11. Percentages correctly answering the question about lifetime risk by local authority area, ethnic group, age group and quintile of deprivation (total sample)

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24

Figure 12. Associations between correctly answering 1 in 9 to the question about lifetime risk and ethnic group, age group and quintile of deprivation

By ethnic group

(Odds ratios for correctly answering 1 in 9 to the question about lifetime risk adjusted for age group and quintile of deprivation. Baseline white ethnic group)

By age group

(Odds ratios for correctly answering 1 in 9 to the question about lifetime risk adjusted for ethnic group and quintile of deprivation. Baseline age 30-44)


(Odds ratios for correctly answering 1 in 9 to the question about lifetime risk adjusted for age group and ethnic group. Baseline highest quintile (least deprived))

See Table 13 in Appendix 2 for the percentages of women answering this question correctly in table form for the random probability and total sample, by local authority area, ethnic group, age group and quintile of deprivation, and odds ratios and 95% CI for differences between the groups unadjusted and adjusted for other variables.


25

Deprivation

There were no clear patterns by quintile of deprivation. The adjusted odds ratios and 95% CI for correctly answering 1 in 9 by quintile of deprivation are shown in Figure 12. Women who had been educated to aged 17 or older were more likely to answer 1 in 9 correctly than women who had been educated to age 16 or younger (48% versus 34%; OR 1.79, 95% CI 1.37 to 2.33). Women living in social housing were less likely to answer 1 in 9 correctly than owner occupiers (41% versus 33%: OR 0.53, 95% CI 0.48 to 0.57). Women living in households where the main income came from benefits or pension were less likely to answer 1 in 9 correctly than women in households where the main income came from wages or salary (46% versus 33%; 95% CI 0.43 to 0.77).

3.4.5. Breast cancer awareness score

Only 10 respondents (0.7%) achieved breast cancer awareness as defined by the validated breast cancer awareness score. We did not perform further analyses because this proportion was so low.

3.4.6. Anticipated delay in seeking help

Of the 1,467 women who answered the question about how soon they would contact their doctor if they found a change in their breast, 73% responded that they would contact their doctor a week or sooner, 25% between one and six weeks and 1% after more than six weeks.

3.4.7. Barriers to seeking medical help

The commonest barriers to seeking help were worry about what the doctor might find, embarrassment, worry about wasting the doctor‟s time and difficulty making an appointment. Figure 13 shows the proportions of women responding “yes, sometimes” or “yes, often” to each possible reason for putting off going to the doctor by local authority area.

There were some differences between the local authority areas in reporting of practical barriers that remained statistically significant after adjusting for age, ethnic group and deprivation: having too many other things to worry about was more common in City and Hackney, and being too busy to make time to see the doctor and being difficult to arrange transport were less common in Newham. Finding it difficult to make an appointment was less common in City and Hackney and Newham than in Tower Hamlets. While there were differences between the local authority areas in reporting of emotional barriers, these were not statistically significant after adjusting for age, ethnic group and deprivation, except that the reporting of what the doctor might find as a barrier was less common in Newham.

Figure 14 shows the proportions of women responding “yes, sometimes” or “yes often” to each possible reason for putting off going to the doctor, by ethnic group.

There were significant differences between ethnic groups in the proportions who reported some barriers. Asian women were much more likely than white women to report that worry about what the doctor might find, embarrassment and, in particular, not feeling confident talking about their symptom might put them off going to the doctor. Embarrassment was reported by 59% of Indian women, 46% of Pakistani and 66% of Bangladeshi women. Worry about what the doctor might find was reported by 46% of Indian women, 63% of Pakistani and 69% of Bangladeshi women. Not feeling confident talking about their symptom was reported by 53% of Indian women, 49% of Pakistani and 59% of Bangladeshi women.

All non-white women were less likely than white women to report that they would be worried about wasting the doctor‟s time. Over 50% of white women reported that worry about wasting the doctor‟s time might put them off going to the doctor for a symptom that might be serious.


26

Figure 13. Proportions of women reporting reasons for putting off going to the doctor by local authority area (total sample)

0 10 20 30 40 50 60 70 80 90 100

Worry about what the doctor might find

Too embarrassed to go and see the doctor

Not feeling confident talking about symptom

Too scared to go and see the doctor

Emotional

Too many other things to worry about

Too busy to make time to go to the doctor

Difficult to arrange transport

Practical

I find my doctor difficult to talk to

Worried about wasting the doctor‟s time

Difficult to make an appointment

Service

Weighted %

City and Hackney

Newham

Tower Hamlets

See Table 14 in Appendix 2 for the same data in table form, with odds ratios and 95% CI for the differences between local authority areas, adjusted for age group, ethnic group and quintile of deprivation.

Figure 14. Proportions of women reporting reasons for putting off going to the doctor by ethnic group

0 10 20 30 40 50 60 70 80 90 100





Emotional




Practical




Service

Weighted %

White

Asian

Black

Other

See Table 15 in Appendix 2 for the same data in table form, with odds ratios and 95% CI for the differences between ethnic groups adjusted for age group and quintile of deprivation.


27

Figure 15 shows the proportions of women responding “yes, sometimes” or “yes often” to each possible reason for putting off going to the doctor by age group. There was a strong association between being worried about wasting the doctor‟s time and older age group. Older women were also much more likely to report difficulties arranging transport and having too many other things to worry about. Older women were much more likely than younger women to be too scared to see the doctor, being embarrassed to go and see the doctor, or being worried about what the doctor might find.

Figure 15. Proportions of women reporting reasons for putting off going to the doctor by age group

0 10 20 30 40 50 60 70 80 90 100





Emotional




Practical




Service

Weighted %

Age 65+

Age 45-64

Age 30-44

See Table 16 in Appendix 2 for the same data in table form, with odds ratios and 95% CI for the differences between age groups adjusted for ethnic group and quintile of deprivation.

3.4.8. Knowledge of the NHS Breast Screening Programme

Knowledge of the existence of the NHS Breast Screening Programme

Figure 16 shows the percentages of women who answered “yes” to the question “Is there an NHS Breast Screening Programme?”, for the total sample and by ethnic group, age group and quintile of deprivation. Overall, 52% of respondents answered “yes” to this question,


There were no significant differences between local authority areas in the proportion knowing of the existence of the NHS Breast Screening Programme.

Ethnic group

Women belonging to all non-white ethnic groups were less likely than white women to know of the existence of the Programme. Asian women, in particular, were much less likely than white women to know of the Programme and the difference remained about the same size after controlling for age group and deprivation. About the same proportion of Pakistani women answered “yes” as white women, but only 46% of Indian and 29% of Bangladeshi women answered “yes”. The differences between the Asian ethnic groups and white women remained similar after adjusting for age and deprivation.

Black women were also less likely than white women to answer “yes” but this difference was less marked and of borderline statistical significance.


28

Figure 16. Percentages knowing that the NHS Breast Screening Programme exists, total sample and by local authority area, ethnic group, age group and quintile of deprivation

0

10

20

30

40

50

60

70

80

90

100

Total sam

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Tower

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City

and

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White

Asian

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See Table 16 in Appendix 2 for the percentages knowing of the existence of the NHS Breast Screening Programme in table form, by local authority area, ethnic group, age group and quintile of deprivation and adjusted odds ratios with 95% CI for the differences

Age

Women aged 45 and older were more likely to know of the existence of the NHS Breast Screening Programme than younger women, although for older women (65+) this was less marked and not statistically significant after controlling for deprivation and ethnic group.

Deprivation

There were no clear patterns by quintile of deprivation. There were no associations with educational level or housing tenure (data not shown). Women living in households where the main income came from pension or benefits were more likely to know of the existence of the NHS Breast Screening Programme than women in households where the main income came from wages or salary, but this was abolished by adjusting for age (data not shown).

Knowledge of the ages at which women are first and last invited for screening on the NHS Breast Screening Programme

Figure 17 shows the percentages of women who gave the correct answers to questions about the ages at which women were invited to the NHS Breast Screening Programme, for the total sample and by ethnic group, age group and quintile of deprivation.

Overall, about 19% of respondents gave an answer to the question “At what age are women first invited to the NHS Breast Screening Programme?” that was between 47 and 53 inclusive and about 13% gave an answer to the question “At what age do women receive their final invitation to the NHS Breast Screening Programme?” that was between 67 and 73 inclusive.

Ethnic group

Asian women were much less likely to give the correct answers to the questions about the ages at which women are first and last invited to the NHS Breast Screening Programme than white women, and the differences remained the same after controlling for age group and quintile of deprivation. Black women were less likely to give the correct answer about the last invitation to screening than white women.


29

Age

Older women were much more likely to give the correct answers to the questions about the ages at which women are first and last invited to the NHS Breast Screening Programme than younger women, although for women aged 65+ this was less marked and not statistically significant after controlling for deprivation and ethnic group.

Deprivation

There was some evidence that women living in the least deprived areas were more likely to get the question about the age at women are first invited to the NHS Breast Screening Programme correct. There were no associations with educational level or housing tenure (data not shown). Women living in households where the main income came from pension or benefits were more likely give the right answers to these questions than women in households where the main income came from wages or salary, but this was abolished by adjusting for age (data not shown).

Figure 17. Percentages knowing the ages at which the NHS Breast Screening Programme first and last invites women for breast screening by local authority area, ethnic group, age group and quintile of deprivation (total sample)

0

10

20

30

40

Total sam

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Tower

Ham

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New

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City

and

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kney

White

Asian

Black

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Age

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to 4

4

Age

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to 6

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Weighted %

Answered between 47 and 53 to question about first invitation

Answered between 67 and 73 to question about last invitation

See Table 16 in Appendix 2 for the percentages providing a correct answer to these questions in table form by local authority area, ethnic group, age group and quintile of deprivation with adjusted odds ratios and 95% CI for the differences.


30

4. DISCUSSION

We carried out a large survey of 1,515 women living in inner North East London.

Breast cancer awareness was low. Less than 1% of respondents were breast cancer aware as defined using the validated breast cancer awareness score.14 In a randomised controlled trial of an intervention to promote early presentation including 867 women aged 67-70 living in South East London, baseline breast cancer awareness was 4%.16 While the trial participants were ethnically mixed and many were from deprived areas, participants had agreed to take part in a randomised trial and were, therefore, not typical of the general population.

We found that 18% recognised five or more non-lump symptoms of breast cancer. For all symptoms, fewer women in this survey recognised breast cancer symptoms from a list than in a national survey of 996 women aged 16 to 96 in 2000.17 In that survey, 80% of women recognised a lump in the breast as a symptom of breast cancer, 70% nipple discharge or bleeding, 39% dimpling of the breast skin and 38% nipple inversion. In the randomised controlled trial mentioned above, 42% of women aged 67-70 at baseline recognised five or more non-lump symptoms.16 Breast pain was commonly cited as a symptom of breast cancer (by 60%) when in fact it is relatively rare.

About a quarter of women reported checking their breasts at least once a month. This proportion is low; in a survey of women aged over 65 in 2007, over two thirds reported checking their breasts at least once a month.18

About half of the respondents were fairly or very confident they would notice a change in their breasts. Fourteen per cent knew that a 70 year old women was at greater risk of breast cancer than a younger woman. This is a lower percentage than that found in the national survey in 2000, when 30% of women recognised older age as a risk factor for breast cancer.17 In our survey, 40% correctly identified the lifetime risk of breast cancer as 1 in 9, higher than the proportion found in the survey in 2000.17

The most frequently reported barriers to going to the doctor with a symptom that might be serious was worry about what the doctor might find, embarrassment, and worry about wasting the doctor‟s time. Fifty two per cent of the women knew of the existence of the NHS Breast Screening Programme; 19% knew the age at which women were first invited, and 13% the age at which women were last invited.

The strengths of this survey are that it is a very large sample and we achieved a very high response rate. The sample was only partly selected using random probability methods. However, the survey sample appeared broadly representative of the population sampled. We used weighting methods in the analysis which to allow for the sampling method. The survey instrument has been validated extensively.14

We found marked differences in breast cancer awareness between ethnic groups. Asian women were very much less likely, and black women less likely, to know about non-lump symptoms of breast cancer and to report breast checking at least once a month than white women, even after allowing for age and level of deprivation. Asian women were more likely to say that they lacked confidence to detect a breast change (especially Bangladeshi women).

Asian women were also less likely than white women to know that the lifetime risk of breast cancer was 1 in 9. This may be because Asian women are accurately assessing their own risk as lower than this; Asian women are known to have a lower risk of developing breast cancer in Asian women.19 UK black women are also less likely to develop breast cancer than white women19; there was no difference between black and white women in the proportions who knew the correct answer to the question about lifetime risk.

Asian women were more likely than white women to correctly identify a 70 year old woman as at greatest risk of breast cancer. This is inconsistent with the findings of a national UK survey in


31

2005 which found that Asian women were less likely to agree with the statement „As women get older their chances of developing breast cancer increase‟ than white women.12

Asian women were much more likely than white women to report that worry about what the doctor might find, embarrassment or not feeling confident talking about a symptom might put them off going to the doctor with a symptom that might be serious. All three emotional barriers were particularly commonly reported by Bangladeshi women. This was broadly consistent with the findings of a national survey of cancer awareness in general.20

White women were more likely to report that being worried about wasting the doctor‟s time might put them off going to the doctor with a symptom that might be serious.

Asian women were much less likely to have a good knowledge of the NHS Breast Screening Programme. Black women also had less knowledge of the NHS Breast Screening Programme than white women.

We also found differences in breast cancer awareness by age group. Women over the age of 65 were more likely to lack confidence to notice a breast change. Women over 65 were no less likely to check their breasts than younger women. They were more likely to know that the risk of breast cancer increases with age but were less likely to know the lifetime risk of breast cancer.

Women aged 65 and older were more likely than younger women to report emotional barriers to seeking medical help, to report that they had too many other things to worry about, and that it was difficult to arrange transport to the doctor‟s surgery. They also were much more likely than younger women to worry about wasting the doctor‟s time.

There were no consistent trends in breast cancer awareness by deprivation. We were surprised to find that women living in more deprived areas had greater knowledge of breast cancer symptoms and were more likely to report breast checking at least once a month, as we might have expected that these would be more common in people with higher levels of education. However, this may have occurred because area-level deprivation indices are likely to misclassify many people as socioeconomically deprived, when in fact they are not. We found limited evidence that more deprived women were less confident to notice breast changes, and that they had less knowledge of the NHS Breast Screening Programme.

There is a growing body of evidence suggesting that low breast cancer awareness is associated with poorer survival in breast cancer through the mechanism of delayed presentation. There is strong evidence that delay in diagnosis influences survival in breast cancer, 21 and that late diagnosis is a major factor accounting for breast cancer survival differences between rich and poor women,22 black and white women,19 and UK and other European countries.3 Further evidence that awareness influences survival comes from the observation in the UK that women belonging to populations most likely to have delayed diagnosis of breast cancer and poorer survival11 19 22 have lower breast cancer awareness, including older women, women of lower socioeconomic status and black women.12 17 18

These findings suggest that the poor one year survival in breast cancer found in North East London may be in part attributable to low levels of breast cancer. Interventions to promote breast cancer awareness may contribute to tackling this. The findings in this survey provide evidence of the specific deficiencies in breast cancer awareness and barriers to early presentation that can be used to design interventions to promote breast cancer awareness and early presentation.


32

References

(1) Department of Health. Cancer Reform Strategy. Gateway reference 9092. 3-12-2007. London, Department of Health.

(2) Berrino F, De Angelis R, Sant M, Rosso S, Lasota MB, Coebergh JW et al. Survival for eight major cancers and all cancers combined for European adults diagnosed in 1995-99: results of the EUROCARE-4 study. Lancet Oncology 2007; 8(9):773-783.

(3) Sant M, Allemani C, Capocaccia R, Hakulinen T, Aareleid T, Coebergh JW et al. Stage at diagnosis is a key explanation of differences in breast cancer survival across Europe. International Journal of Cancer 2003; 106(3):416-422.

(4) Gatta G, Capocaccia R, Sant M, Bell CMJ, Coebergh JWW, Damhuis RAM et al. Understanding variations in survival for colorectal cancer in Europe: a EUROCARE high resolution study. Gut 2000; 47(4):533-538.

(5) Sant M, Aareleid T, Artioli ME, Berrino F, Coebergh JW, Colonna M et al. Ten-year survival and risk of relapse for testicular cancer: A EUROCARE high resolution study. European Journal of Cancer 2007; 43(3):585-592.

(6) Macleod U, Mitchell ED, Burgess C, MacDonald S, Ramirez AJ. Risk factors for delayed presentation and referral of symptomatic cancer: evidence for common cancers. British Journal of Cancer 2009; 101:s92-s101

(7) National Cancer Intelligence Network. One year cancer survival by cancer network, England, 2001-2004. 2009.

(8) Department of Health. Cancer Reform Strategy. Achieving local implementation: second annual report. 1-12-2009. London, Department of Health.

(9) Office for National Statistics. Cancer statistics registrations; registrations of cancers diagnosed in 2007. 2010. Newport, Office for National Statistics.

(10) NHS Breast Screening Programme. Breast Screening Programme, England 2007-08. 2009. London, The Information Centre for Health and Social Care.

(11) Ramirez AJ, Westcombe AM, Burgess CC, Sutton S, Littlejohns P, Richards MA. Factors predicting delayed presentation of symptomatic breast cancer: a systematic review. Lancet 1999; 353(9159):1127-1131.

(12) Scanlon K, Wood A. Breast cancer awareness in Britain: are there difference based on ethnicity? Diversity in Health and Social Care 2005; 2:211-221.

(13) Renshaw C, Jack RH, Dixon S, Moller H, Davies EA. Assessing differences in attendance for breast cancer screening in ethnic groups, London 2004-2007. Cancer in South East England 2006. London: Thames Cancer Registry; 2008.

(14) Linsell L, Forbes LJ, Burgess C, Kapari M, Thurnham A, Ramirez AJ. Validation of a measurement tool to assess awareness of breast cancer. Eur J Cancer 2010; 46(8):1374-1381.

(15) Burgess CC, Linsell L, Kapari M, Omar L, Michell M, Whelehan P et al. Promoting early presentation of breast cancer by older women: A preliminary evaluation of a one-to-one health professional-delivered intervention. Journal of Psychosomatic Research 2009; 5:377-387.

(16) Linsell L, Forbes LJL, Burgess C, Kapari M, Omar L, Tucker L et al. A randomised controlled trial of an intervention to promote early presentation of breast cancer in older women: effect on breast cancer awareness. British Journal of Cancer 2009; 101:s40-s48.

(17) Grunfeld EA, Ramirez AJ, Hunter MS, Richards MA. Women's knowledge and beliefs regarding breast cancer. British Journal of Cancer 2002; 86(9):1373-1378.

(18) Linsell L, Burgess CC, Ramirez AJ. Breast cancer awareness among older women. British Journal of Cancer 2008; 99:1221-1225.

(19) Jack RH, Davies EA, Moller H. Breast cancer incidence, stage, treatment and survival in ethnic groups in South East England. British Journal of Cancer 2009; 100(3):545-550.

(20) Waller J, Robb KA, Stubbings S, Ramirez A, Macleod U, Austoker J et al. Awareness of cancer symptoms and anticipated help-seeking among ethnic minority groups in England. British Journal of Cancer 2009; 101:s24-s30.

(21) Richards MA, Westcombe AM, Love SB, Littlejohns P, Ramirez AJ. Influence of delay on survival in patients with breast cancer: a systematic review. Lancet 1999; 353(9159):1119-1126.

(22) Downing A, Prakash K, Gilthorpe MS, Stefoski MJ, Forman D. The effect of socioeconomic background on stage at diagnosis, treatment pattern and survival in women with invasive breast cancer. British Journal of Cancer 2007; 96:836-840.

Appendix 1

Participant ID number or sticker

Script and response sheet for the Breast Module of the Cancer Awareness Measure

The B-CAM was developed by Cancer Research UK, King‟s College London and University College London in 2009. It was validated with the support of Breast Cancer Care and Breakthrough Breast Cancer.

Instructions

Please read out each question to the woman in a similar way exactly as it is written

If a woman asks for more details or help, please say that for the purposes of the study you cannot give any prompts or explanations (other than those described), tell her that we are interested in her own thoughts and beliefs and if necessary repeat the question.

You may say that you can discuss queries once the interview is complete (if appropriate to the study design).

Do not return to a previous question.

Do not allow the woman to read the questions on this form. It would be helpful to have a clipboard for this purpose.

It is possible to record the response as „refused‟. Record „refused‟ when the woman actively chooses not to respond.

If a respondent has any questions about symptoms they have had or other questions about breast cancer, please advise them to speak to their GP.

Please indicate whether this interview was held face-to-face, over the telephone or via the internet.

Face-to-face Telephone Internet

Please indicate if in a health service setting, a home setting or elsewhere.

Health service setting Home

Other setting (please describe)

…………………………………

Please indicate which language was used to administer the interview.

English Other language (please describe)

……………………………………………………………..

The text written in the shaded boxes is what you should read out to the woman.

2

Start of interview

We are asking these questions to find out more about breast cancer awareness. It should take around 15 minutes. It is not a test. We are interested in your thoughts and beliefs so please answer the questions as honestly as you can. All your answers will be treated as strictly confidential. I am unable to answer questions during the interview, but there will be time at the end to discuss any questions you might have. I can not go back to a question that has already been asked as we are interested in your first response and later questions may give clues to the right answers.

QUESTION TO FIND OUT ABOUT PERSONAL EXPERIENCE OF BREAST CANCER

The first question is about any experience you may have had about breast cancer.

Have you ever had breast cancer? Yes No Don‟t know

Refused

If YES: I am sorry to hear that. As this interview is about breast cancer awareness, are you happy for me to continue?

Yes No

If NO stop the interview. If YES go to Domain 1.

3

DOMAIN 1 KNOWLEDGE OF SYMPTOMS

First of all, please would you name as many early warning signs of breast cancer as you can think of:

Prompt “anything else” until the woman can think of no more warning signs or symptoms. If a woman says she does not know or cannot think of any signs or symptoms for breast cancer, please prompt with “Are you sure?” and if necessary “Take a minute to think about it”.

Please write down all of the warning signs and symptoms of breast cancer that the woman mentions in the box below

Anything else?

4

Can you tell me whether you think any of these are warning signs of breast cancer or not?

Do not prompt. If the woman asks for explanation, please read out the relevant „Explanation‟ where available. Please only read these out if necessary.

Tick the appropriate boxes Yes No Don‟t know

Refused

Do you think a change in the position of your nipple could be a sign of breast cancer?

[Explanation]: such as pointing up or down or in a different direction to normal

Do you think pulling in of your nipple could be a sign of breast cancer?

[Explanation]: where the nipple no longer points outwards, but into the breast

Do you think pain in one of your breasts or armpit could be a sign of breast cancer?

Do you think puckering or dimpling of your breast skin could be a sign of breast cancer?

[Explanation]: like a dent or orange peel appearance

Do you think discharge or bleeding from your nipple could be a sign of breast cancer?

Do you think a lump or thickening in your breast could be a sign of breast cancer?

Do you think a nipple rash could be a sign of breast cancer?

Do you think redness of your breast skin could be a sign of breast cancer?

Do you think a lump or thickening under your armpit could be a sign of breast cancer?

Do you think changes in the size of your breast or nipple could be signs of breast cancer?

Do you think changes in the shape of your breast or nipple could be signs of breast cancer?

5

DOMAIN 2 CONFIDENCE, SKILLS AND BEHAVIOUR IN RELATION TO BREAST CHANGES

The next three questions are about finding changes in your breasts.

How often do you check your breasts?

Tick one box only.

Rarely or never

At least once every 6 months

At least once a month

At least once a week

Don‟t know

Refused

If the respondent gives an answer that falls between two categories, please tick as the most conservative response, in other words, less frequent breast checking.

Are you confident you would notice a change in your breasts?

Tick one box only.

Not at all confident

Slightly confident

Fairly confident

Very confident

Don‟t know

Refused

Have you ever been to see a doctor about a change you have noticed in one of your breasts?

Tick one box only. Do not prompt.

Yes

No

Never noticed a change in one of my breasts

Don‟t know

Refused

6

DOMAIN 3 ANTICIPATED DELAY IN CONTACTING THE DOCTOR

The next question is about how soon you would contact your doctor after finding a change in your breasts.

If you found a change in your breast, how soon would you contact your doctor?

Tick one box only. Do not prompt.

1-3 days

4-6 days

1 week

2 weeks

1 month

6 weeks

3 months

6 months

12 months

Never

Don‟t know Refused

If the respondent gives an answer that falls between two categories, please tick the most conservative response, in other words, the longer time period.

7

DOMAIN 4 BARRIERS TO SEEKING MEDICAL HELP

The next set of questions is about what might stop you from going to the doctor.

Sometimes people put off going to see the doctor, even when they have a symptom that they think might be serious. Could you say if any of these might put you off going to the doctor? You may answer „yes often,‟ „yes sometimes‟ or „no‟.

Tick the appropriate boxes Yes often

Yes some-times

No Don‟t know

Refused





Difficult to make an appointment with the doctor



Difficult to arrange transport to the doctor‟s surgery

Worrying about what the doctor might find may stop me from going to the doctor

Not feeling confident talking about my symptom with the doctor

For women completing questionnaire in language other than English

Yes No Not

applic-able

Don‟t know

Refused

My doctor does not understand my language or culture

Is there anything else that you can think of that might put you off going to the doctor?

Record verbatim

8

DOMAIN 5 KNOWLEDGE OF AGE-RELATED AND LIFETIME RISK

The next question is about who you think is most likely to get breast cancer.

Tick one box only. Do not prompt

In the next year, who is most likely to get breast cancer?

A 30 year old woman

A 50 year old woman

A 70 year old woman

A woman of any age

Don‟t know

Refused

The next question is about how many women you think will develop breast cancer in their lifetime. Please look at these pictures/imagine groups of 3, 9, 100 and 1000 women.

Tick one box only. Do not prompt. If it is a face-to-face interview, please show the respondent the prompt card associated with this question (found at the end of this script and response sheet). If the interview is over the telephone, please ask the respondent to imagine a group of 3/9/100/1000 people.

How many women will develop breast cancer in their lifetime?

1 in 3 women

1 in 9 women

1 in 100 women

1 in 1000 women

Don‟t know

Refused

9

DOMAIN 6 KNOWLEDGE OF BREAST SCREENING

The next set of questions is about breast screening.

Tick one box only. Do not prompt. Yes No Don‟t know

Refused

Is there an NHS Breast Screening Programme?

If NO or DON‟T KNOW

go to the demographic questions

Don‟t know

Refused

If YES At what age are women first invited to the NHS Breast Screening Programme?

Write age

At what age do women receive their last invitation to the NHS Breast Screening Programme?

Write age

Yes No

Don‟t know

Refused

Have you ever been invited for breast screening on the NHS Breast Screening Programme?

Have you ever had breast screening on the NHS Breast Screening Programme?

10

DEMOGRAPHIC QUESTIONS

Now I have a few questions about yourself.

What is the main language spoken at home?

Do not read out the names of the languages. Allow the respondent to answer.

English Sylheti

Urdu Bengali

Punjabi French

Gujarati Other (please write name of language)

Refused ………………………………………………………

Could you tell me which of these best describes your living arrangements?

Own outright or have a mortgage Rent from private landlord

Rent from Council/Housing Association Other (please describe)…………………


Could you tell me how old you are? Don‟t know Refused

Could you tell me your postcode? Don‟t know Refused

Are you registered with a GP? Yes No Don‟t know Refused

Were you born in the UK? Yes No Don‟t know Refused

Does anyone living in your home have a car or van available for use?

Yes No Don‟t know Refused

Could you tell me what age you left full time education?


11

Please would you look at this list (on separate page). Which one best describes your ethnic group?

If the interview is over the telephone, please read these aloud.

White Mixed Asian or Asian British

Black or Black British

Chinese or other

White British

White and Black Caribbean

Indian Black Caribbean

Chinese

White Irish White and Black African

Pakistani Black African

Other………..

………………

Any other White background

White and Asian

Bangladeshi Any other Black background

(please describe)

Any other Mixed background

Any other Asian background


Could you tell me, where does your household get most of its income from?

Wages or salary Benefits (including unemployment or sickness benefit)

Pension Other (please describe)…………………


12

Thank you for answering these questions. As I said before, all your answers will be treated with the strictest confidence.

Now that the interview is over, do you have any questions you would like to ask?

Have you any comments on the questions I have been asking you?

Please record any further information here

If a respondent has any questions about symptoms they have had or other questions about breast cancer, please advise them to speak to their GP.

13

This picture is for use when asking the question about lifetime risk

1 in 3

1 in 9

1 in 100

1 in 1000

14

This list is for use when asking the question about ethnic group

Ethnic groups (Census classification)

Please indicate your ethnic group from the shaded boxes.

White Mixed Asian or Asian British

Black or Black British

Chinese or other

White British White and Black Caribbean

Indian Black Caribbean Chinese

White Irish White and Black African

Pakistani Black African Other

Any other White background

White and Asian Bangladeshi Any other Black background

Any other Mixed background

Any other Asian background

15

Appendix 2. Data tables

Table 8: Recall and recognition of breast cancer symptoms

Recall following open question Recognition from a list

Random probability

sample Total sample

Random probability

sample Total sample

n (%) n (%)

Weighted % (95% CI)

n (%) n (%) Weighted %

(95% CI)

Lump in breast 540 (50.9) 751 (49.6) 50.7 (47.7 to 53.7) 824 (77.7) 1,164 (76.8) 77.2 (74.7 to 79.7)

Pain in breasts or armpit 253 (23.9) 348 (23.0) 22.6 (20.1 to 35.1) 661 (62.3) 933 (61.6) 60.3 (57.3 to 63.3)

Discharging/bleeding nipple 104 (9.8) 145 (9.6) 9.4 (7.6 to 11.2) 283 (26.7) 392 (25.9) 25.9 (23.2 to 28.6)

Lump in armpit 49 (4.6) 59 (3.9) 4.3 (3.1 to 5.5) 265 (25.0) 348 (23.0) 22.3 (19.9 to 24.8)

Change in size of breast 48 (4.5) 63 (4.1) 4.4 (3.2 to 5.7) 224 (21.1) 294 (19.4) 19.6 (17.3 to 22.0)

Rash on nipple/breast 32 (3.0) 47 (3.1) 3.0 (2.0 to 3.9) 107 (10.1) 144 (9.5) 8.7 (7.1 to 10.4)

Change in shape of breast 26 (2.5) 37 (2.4) 2.4 (1.5 to 3.2) 134 (12.6) 166 (11.9) 10.6 (8.9 to 12.4)

Change in position of nipple 23 (2.2) 27 (1.8) 1.5 (0.8 to 2.2) 362 (34.1) 509 (33.6) 34.9 (32.0 to 37.8)

Redness of breast skin 14 (1.3) 18 (1.2) 1.2 (0.5 to 1.8) 170 (16.0) 224 (14.8) 14.1 (12.1 to 16.1)

Puckering or dimpling 8 (0.8) 10 (0.7) 0.7 (0.1 to 1.2) 239 (22.5) 345 (22.8) 22.8 (20.3 to 25.3)

Pulling in of nipple 5 (0.5) 8 (0.5) 0.1 (0.0 to 0.1) 264 (24.9) 357 (23.6) 24.5 (21.9 to 27.1)

16

Table 9: Recognition of five or more non-lump symptoms

Random probability

sample

Total sample Odds ratio for being able to recognise five or more non-lump symptoms

n (%) n (%) Weighted % (95% CI) Crude (95 % CI) Adjusted* (95% CI)

All 210 (19.8) 275 (18.2) 17.7 (15.4 to 20.0)


Tower Hamlets 69 (21.2) 86 (18.4) 18.1 (14.2 to 22.1) 1.00 1.00

Newham 71 (17.9) 100 (17.5) 14.3 (11.0 to 17.5) 0.75 (0.51 to 1.09) 0.80 (0.53 to 1.20)

City and Hackney 70 (20.7) 89 (18.7) 21.3 (16.9 to 25.8) 1.22 (0.84 to 1.78) 1.09 (0.75 to 1.59)

Ethnic group

White (baseline) 153 (22.7) 178 (22.1) 22.1 (18.9 to 25.3) 1.00 1.00

Asian 20 (10.6) 31 (9.3) 9.6 (5.3 to 13.8) 0.37 (0.22 to 0.63) 0.36 (0.21 to 0.61)

Black 13 (11.1) 29 (14.7) 15.9 (10.7 to 21.2) 0.67 (0.43 to 1.03) 0.61 (0.40 to 0.94)

Other 23 (29.5) 25 (23.6) 15.1 (8.2 to 22.1) 0.63 (0.36 to 1.11) 0.58 (0.32 to 1.08)

Age group

30 to 44 (baseline) 135 (18.5) 114 (19.7) 16.8 (13.8 to 19.9) 1.00 1.00

45 to 64 112 (18.5) 78 (19.9) 17.5 (14.1 to 20.8) 1.05 (0.76 to 1.44) 1.15 (0.83 to 1.59)

65+ 26 (15.9) 17 (21.5) 20.8 (13.5 to 28.0) 1.29 (0.79 to 2.11) 1.21 (0.72 to 2.01)

Quintile of deprivation

1 Least deprived (baseline) 62 (16.2) 46 (18.9) 14.4 (10.4 to 18.3) 1.00 1.00

2 51 (17.1) 43 (18.1) 15.2 (10.6 to 19.7) 1.06 (0.66 to 1.71) 1.17 (0.73 to 1.89)

3 47 (19.9) 39 (21.6) 17.3 (11.9 to 22.7) 1.25 (0.76 to 2.04) 1.50 (0.91 to 2.47)

4 58 (20.9) 39 (21.7) 23.6 (17.4 to 19.8) 1.84 (1.15 to 2.93) 2.19 (1.36 to 3.54)

5 Most deprived 57 (18.2) 43 (20.0) 19.6 (14.3 to 24.8) 1.45 (0.91 to 2.30) 1.72 (1.08 to 2.75)

*Local authority area: adjusted for ethnic group, age group and quintile of deprivation; Ethnic group: adjusted for age group and quintile of deprivation; Age group: adjusted for ethnic group and quintile of deprivation; Deprivation: adjusted for ethnic group and age group.

17

Table 10: Frequency of breast checking: reported breast checking at least once a month

Random probability

sample

Total sample Odds ratio for breast checking at least once a month


(95% CI) Crude (95 % CI) Adjusted* (95% CI)

All 233 (23.0) 338 (23.1) 22.6 (20.1 to 25.2)


Tower Hamlets (baseline) 67 (21.6) 103 (22.9) 21.5 (17.3 to 25.7) 1.00 1.00

Newham 82 (21.5) 119 (21.6) 20.1 (16.3 to 25.4) 0.96 (0.66 to 1.39) 1.05 (0.72 to 1.55)


Ethnic group


Asian 28 (15.6) 53 (16.7) 12.6 (7.6 to 17.6) 0.38 (0.23 to 0.61) 0.38 (0.24 to 0.62)

Black 21 (18.8) 51 (19.9) 17.8 (12.5 to 23.0) 0.57 (0.38 to 0.85) 0.55 (0.37 to 0.84)

Other 14 (18.9) 24 (24.0) 32.8 (17.2 to 48.4) 1.28 (0.62 to 2.63) 1.27 (0.68 to 2.38)

Age group

30 to 44 (baseline) 104 (18.5) 118 (16.6) 16.5 (13.4 to 19.6) 1.00 1.00

45 to 64 112 (30.3) 178 (31.0) 30.4 (25.6 to 35.1) 2.21 (1.61 to 3.03) 2.33 (1.68 to 3.24)

65+ 16 (21.9) 41 (26.6) 25.3 (17.6 to 32.9) 1.72 (1.08 to 2.71) 1.56 (0.98 to 2.50)



2 57 (24.4) 65 (22.0) 18.4 (13.5 to 23.1) 0.60 (0.40 to 0.91) 0.67 (0.44 to 1.03)

3 41 (23.3) 51 (22.5) 21.8 (15.2 to 28.5) 0.75 (0.47 to 1.19) 0.95 (0.58 to 1.55)

4 40 (24.7) 59 (23.0) 24.4 (17.2 to 31.8) 0.87 (0.54 to 1.39) 1.17 (0.74 to 1.86)



18

Table 11: Confidence to notice a change in breasts: fairly or very confident

Random probability

sample

Total sample Odds ratio for being fairly or very confident to notice a breast change



All 524 (53.8) 716 (51.5) 51.8 (48.6 to 55.0)



Newham 176 (50.6) 254 (49.3) 47.7 (42.3 to 53.1) 0.83 (0.61 to 1.12) 0.84 (0.61 to 1.17)


Ethnic group


Asian 773 (45.3) 136 (44.6) 47.4 (39.8 to 54.9) 0.73 (0.52 to 1.03) 0.68 (0.48 to 0.96)

Black 50 (47.6) 113 (48.5) 50.2 (42.7 to 57.7) 0.82 (0.58 to 1.15) 0.78 (0.56 to 1.10)

Other 38 (51.4) 52 (51.0) 44.1 (31.1 to 57.1) 0.64 (0.37 to 1.11) 0.62 (0.37 to 1.04)

Age group

30 to 44 (baseline) 299 (55.7) 361 (53.1) 54.4 (50.2 to 49.0) 1.00 1.00

45 to 64 191 (52.8) 291 (51.2) 51.5 (46.5 to 56.5) 0.88 (0.67 to 1.15) 0.83 (0.63 to 1.09)

65+ 32 (46.4) 62 (43.4) 43.7 (34.4 to 53.0) 0.65 (0.43 to 0.97) 0.55 (0.46 to 0.84)



2 126 (56.3) 144 (51.1) 49.7 (42.8 to 56.6) 0.79 (0.54 to 1.13) 0.80 (0.55 to 1.16)

3 86 (52.4) 118 (54.6) 53.7 (45.7 to 61.6) 0.92 (0.62 to 1.38) 0.93 (0.61 to 1.04)

4 74 (47.4) 111 (45.9) 46.1 (38.2 to 53.9) 0.68 (0.46 to 1.01) 0.66 (0.43 to 1.00)



19

Table 12: Knowledge of age-related risk: answering that a 70 year old was at greatest risk

Random probability

sample

Total sample Odds ratio for correctly identifying a 70 year old woman as at greatest risk



All 141 (13.3) 224 (14.8) 14.4 (12.2 to 16.5)



Newham 57 (14.4) 88 (15.4) 16.2 (12.5 to 19.8) 1.01 (0.68 to 1.51) 1.05 (0.68 to 1.64)


Ethnic group


Asian 44 (23.4) 78 (23.4) 22.4 (16.7 to 28.2) 2.22 (1.46 to 3.34) 2.62 (1.73 to 3.97)

Black 16 (13.7) 40 (15.1) 13.3 (8.6 to (18.1) 1.18 (0.73 to 1.90) 1.31 (0.80 to 2.14)

Other 9 (11.5) 15 (14.2) 13.6 (6.2 to 20.9) 1.21 (0.62 to 2.34) 1.39 (0.70 to 2.77)

Age group

30 to 44 (baseline) 67 (11.6) 93 (12.7) 12.1 (9.4 to 14.8) 1.00 1.00

45 to 64 53 (13.5) 87 (14.4) 13.9 (10.8 to 17.0) 1.17 (0.81 to 1.69) 1.28 (0.88 to 1.86)

65+ 20 (25.3) 43 (26.2) 22.1 (15.0 to 29.3) 2.07 (1.27 to 3.35) 2.67 (1.63 to 4.40)



2 31 (13.1) 44 (14.7) 13.5 (9.0 to 18.0) 1.01 (0.61 to 1.69) 1.00 (0.59 to 1.69)

3 27 (14.9) 35 (14.8) 13.2 (8.4 to 18.0) 0.99 (0.57 to (1.70) 1.02 (0.58 to 1.80)

4 26 (14.4) 44 (15.8) 16.6 (11.1 to 22.0) 1.29 (0.77 to 2.16) 1.44 (0.84 to 2.44)



20

Table 13: Knowledge of lifetime risk


Total sample Odds ratio for correctly identifying the lifetime risk as 1 in 9


(95% CI) Crude (95 % CI) Adjusted * (95% CI)

All 443 (41.8) 623 (41.1) 40.2 (0.37 to 0.43)



Newham 175 (44.1) 262 (45.8) 44.4 (39.3 to 49.4) 1.27 (0.95 to 1.72) 1.33 (0.97 to 1.83)


Ethnic group


Asian 61 (32.5) 110 (33.0) 32.8 (26.0 to 39.7) 0.64 (0.46 to 0.91) 0.57 (0.40 to 0.80)

Black 49 (41.9) 109 (41.1) 42.7 (35.7 to 49.7) 0.98 (0.71 to 1.36) 0.86 (0.62 to 1.20)

Other 23 (29.5) 36 (34.0) 32.6 (21.2 to 44.0) 0.64 (0.36 to 1.09) 0.58 (0.34 to 1.00)

Age group

30 to 44 (baseline) 252 (43.6) 319 (43.6) 43.1 (38.9 to 0.47) 1.00 1.00

45 to 64 162 (41.2) 256 (42.2) 41.1 (36.4 to 45.8) 0.92 (0.71 to 1.19) 0.90 (0.69 to 1.17)

65+ 26 (32.9) 44 (26.8) 29.9 (22.0 to 27.8) 0.56 (0.37 to 0.85) 0.52 (0.34 to 0.79)



2 87 (36.7) 109 (36.5) 32.9 (26.7 to 39.0) 0.73 (0.51 to 1.06) 0.75 (0.52 to 1.09)

3 92 (50.8) 121 (51.3) 51.1 (43.5 to 58.7) 1.58 (1.08 to 2.33) 1.58 (1.06 to 2.53)

4 69 (38.3) 114 (41.0) 39.2 (32.1 to 46.3) 0.98 (0.67 to 1.43) 0.95 (0.63 to 1.41)



21

Table 14: Barriers to going to the doctor with a symptom that might be serious by local authority area of residence

All Tower Hamlets (baseline) Newham City and Hackney

% % OR % Adjusted OR* (95% CI) % Adjusted OR* (95% CI)

Emotional barriers

Worry about what the doctor might find 47.1 50.3 1.00 41.3 0.62 (0.44 to 0.85) 50.8 1.15 (0.85 to 1.57)

Too embarrassed to go and see the doctor 37.7 41.8 1.00 35.9 0.74 (0.52 to 1.05) 35.6 1.06 (0.75 to 1.73)

Not feeling confident talking about symptom 29.0 32.2 1.00 27.1 0.73 (0.49 to 1.07) 27.9 1.02 (0.84 to 1.58)

Too scared to go and see the doctor 26.9 29.6 1.00 22.9 0.77 (0.53 to 1.13) 29.0 1.11 (0.79 to 1.58)

Practical barriers

Too many other things to worry about 33.3 31.4 1.00 29.2 0.97 (0.68 to 1.39) 40.3 1.55 (1.12 to 2.15)

Too busy to make time to go to the doctor 32.9 35.8 1.00 26.6 0.61 (0.43 to 0.86) 37.7 1.00 (0.73 to 1.37)

Difficult to arrange transport 14.7 16.3 1.00 9.6 0.52 (0.31 to 0.90) 19.2 1.56 (0.92 to 2.30)

Service barriers

I find my doctor difficult to talk to 22.2 22.6 1.00 20.0 0.79 (0.55 to 1.16) 24.4 1.09 (0.76 to 1.57)

Worried about wasting the doctor‟s time 36.5 37.9 1.00 30.1 0.86 (0.60 to 1.24) 42.8 1.26 (0.89 to 1.77)

Difficult to make an appointment 35.3 42.9 1.00 32.4 0.60 (0.43 to 0.83) 31.5 0.62 (0.45 to 0.86)

*adjusted for age group, ethnic group and quintile of deprivation

weighted percentage: total sample

22

Table 15: Barriers to going to the doctor with a symptom that might be serious by ethnic group

White (baseline) Asian Black Other

% OR % Adjusted OR* (95% CI) % Adjusted OR* (95% CI) % Adjusted OR* (95% CI)

Emotional barriers

Worry about what the doctor might find 44.3 1.00 58.2 2.04 (1.46 to 2.87) 45.5 1.22 (0.87 to 1.72) 35.5 0.82 (0.49 to 1.37)

Too embarrassed to go and see the doctor 31.2 1.00 61.2 4.24 (3.00 to 6.00) 29.9 1.07 (0.74 to 1.54) 34.5 1.36 (0.77 to 2.39)

Not feeling confident talking about symptom 18.8 1.00 54.9 5.40 (3.77 to 7.74) 23.9 1.39 (0.94 to 2.08) 41.9 3.12 (1.79 to 5.50)

Too scared to go and see the doctor 28.5 1.00 29.3 1.22 (0.84 to 1.77) 20.0 0.75 (0.50 to 1.12) 27.0 1.15 (0.69 to 1.98)

Practical barriers

Too many other things to worry about 36.5 1.00 29.6 0.80 (0.55 to 1.16) 31.5 0.87 (0.61 to 1.24) 24.7 0.64 (0.38 to 1.08)

Too busy to make time to go to the doctor 34.8 1.00 27.9 0.69 (0.48 to 0.98) 34.0 0.98 (0.69 to 1.39) 30.9 0.75 (0.45 to 1.27)

Difficult to arrange transport 15.6 1.00 14.1 1.40 (0.86 to 2.28) 13.9 1.31 (0.81 to 2.15) 11.2 1.10 (0.48 to 2.52)

Service barriers

I find my doctor difficult to talk to 23.1 1.00 21.1 0.97 (0.65 to 1.43) 22.7 1.08 (0.72 to 1.63) 16.0 0.69 (0.37 to 1.26)

Worried about wasting the doctor‟s time 52.7 1.00 16.7 0.20 (0.13 to 0.32) 20.9 0.26 (0.18 to 0.40) 16.1 0.23 (0.12 to 0.42)

Difficult to make an appointment 36.0 1.00 40.9 1.21 (0.87 to 1.70) 29.6 0.74 (0.52 to 1.05) 27.8 0.67 (0.38 to 1.17)

*adjusted for age group and quintile of deprivation


23

Table 16: Barriers to going to the doctor with a symptom that might be serious by age group

Age 30-44 Age 45-64 Age 65+

% OR % Adjusted OR* (95% CI) % Adjusted OR* (95% CI)

Emotional barriers

Worry about what the doctor might find 44.2 1.00 44.9 0.96 (0.74 to 1.27) 59.5 1.93 (1.28 to 2.90)

Too embarrassed to go and see the doctor 31.7 1.00 42.6 1.70 (1.27 to 2.28) 45.6 2.35 (1.55 to 3.54)

Not feeling confident talking about symptom 29.4 1.00 31.2 0.73 (0.49 to 1.07) 23.1 1.00 (0.64 to 1.56)

Too scared to go and see the doctor 22.0 1.00 28.1 1.12 (0.82 to 1.54) 38.6 2.02 (1.32 to 3.11)

Practical barriers

Too many other things to worry about 27.8 1.00 36.5 1.42 (1.07 to 1.88) 43.4 1.77 (1.18 to 2.67)

Too busy to make time to go to the doctor 35.7 1.00 33.1 0.86 (0.65 to 1.13) 24.7 0.51 (0.33 to 0.80)

Difficult to arrange transport 5.7 1.00 15.7 3.29 (2.05 to 5.28) 39.4 12.23 (6.90 to 21.70)

Service barriers

I find my doctor difficult to talk to 19.0 1.00 26.4 1.40 (1.03 to 1.92) 23.0 1.15 (0.72 to 1.95)

Worried about wasting the doctor‟s time 25.4 1.00 34.5 1.36 (1.01 to 1.83) 72.3 5.93 (3.87 to 9.08)

Difficult to make an appointment 37.4 1.00 32.9 0.84 (0.63 to 1.11) 34.1 0.89 (0.59 to 1.35)

*adjusted for ethnic group and quintile of deprivation


24

Table 16. Knowledge of the NHS Breast Screening Programme

Answered “yes” to “Is there an NHS Breast Screening

Programme? Answered between 47 and 53 to “At what age are

women first invited?” Answered between 67 and 73 to “At what age do

women receive their last invitation?”

Odds ratio Odds ratio Odds ratio

% Crude (95% CI) Adjusted * (95% CI) % Crude (95% CI) Adjusted * (95% CI) % Crude (95% CI) Adjusted * (95% CI)

All 52.3 18.6 13.4


Tower Hamlets (baseline) 50.8 1.00 1.00 18.8 1.00 1.00 13.4 1.00 1.00

Newham 53.1 1.10 (0.82 to 1.47) 1.23 (0.90 to 1.69) 18.6 0.99 (0.69 to 1.42) 1.09 (0.73 to 1.65) 13.7 1.02 (0.67 to 1.55) 1.21 (0.77 to 1.91)

City and Hackney 52.9 1.09 (0.81 to 1.47) 1.03 (0.76 to 1.39) 18.2 0.96 (0.66 to 1.39) 0.93 (0.63 to 1.39) 13.4 1.00 (0.65 to 1.52) 0.96 (0.63 to 1.49)

Ethnic group

White (baseline) 58.5 1.00 1.00 22.2 1.00 1.00 17.5 1.00 1.00

Asian 41.6 0.51 (0.36 to 0.70) 0.51 (0.37 to 0.72) 11.3 0.45 (0.28 to 0.71) 0.44 (0.28 to 0.71) 8.8 0.46 (0.26 to 0.80) 0.46 (0.27 to 0.79)

Black 50.9 0.73 (0.53 to 1.01) 0.73 (0.53 to 1.02) 17.1 0.72 (0.47 to 1.11) 0.73 (0.48 to 1.13) 8.2 0.42 (0.25 to 0.72) 0.41 (0.24 to 0.69)

Other 40.4 0.48 (0.26 to 0.88) 0.49 (0.28 to 0.85) 17.5 0.74 (0.41 to 1.35) 0.76 (0.40 to 1.44) 13.1 0.71 (0.36 to 1.40) 0.67 (0.33 to 1.38)

Age group

30 to 44 (baseline) 45.4 1.00 1.00 11.6 1.00 1.00 11.8 1.00 1.00

45 to 64 59.7 1.78 (1.38 to 2.30) 1.81 (1.38 to 2.37) 28.4 3.04 (2.18 to 4.23) 2.96 (2.10 to 4.17) 15.4 1.36 (0.95 to 1.93) 1.41 (0.98 to 2.03)

65+ 57.5 1.63 (1.10 to 2.40) 1.43 (0.97 to 2.12) 19.0 1.80 (1.07 to 3.01) 1.52 (0.90 to 2.58) 14.4 1.26 (0.72 to 2.20) 1.11 (0.64 to 1.93)


1 Least deprived (baseline) 54.1 1.00 1.00 22.1 1.00 1.00 14.9 1.00 1.00

2 51.7 0.91 (0.63 to 1.30) 1.00 (0.70 to 1.44) 19.4 0.85 (0.55 to 1.30) 0.96 (0.62 to 1.47) 10.7 0.68 (0.42 to 1.12) 0.76 (0.46 to 1.25)

3 50.9 0.88 (0.60 to 1.29) 1.03 (0.67 to 1.54) 16.3 0.68 (0.42 to 1.12) 0.81 (0.49 to 1.33) 13.2 0.87 (0.50 to 1.51) 1.09 (0.62 to 1.91)

4 50.0 0.85 (0.58 to 1.24) 1.09 (0.73 to 1.61) 14.3 0.59 (0.36 to 0.97) 0.81 (0.48 to 1.36) 16.2 1.10 (0.67 to 1.82) 1.37 (0.81 to 2.32)

5 Most deprived 54.0 1.00 (0.70 to 1.42) 1.18 (0.81 to 1.71) 19.1 0.83 (0.54 to 1.28) 1.02 (0.65 to 1.59) 12.5 0.82 (0.49 to 1.36) 0.99 (0.59 to 1.67)


Weighted percentage

awareness of breast cancer among women living in inner ...nre/@… · living in inner north east...

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