GETTING A GRIP. A Report Into Breast Health Understanding Among Women In Australia

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1 GETTING A GRIP A Report Into Breast Health Understanding Among Women In Australia Based on independent research carried out by AMR for the McGrath Foundation October 2016

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3 FOREWORD With the sheer number of people in Australia affected by breast cancer almost 16,000 expected to be diagnosed during 2016, and more than 200,000 living with the disease it would be easy to be complacent and assume that there are high levels of breast awareness in Australia. Yet awareness alone doesn t have an impact on the disease not on earlier diagnosis, not on survival rates, not on breast screening uptake. Equally important, but discussed less often, are the factors of: Confidence Knowledge Behaviour The McGrath Foundation has, for the first time, conducted robust research into these four aspects that make up what we call breastpertise and the results of the McGrath Breast Health Index are both alarming, and hopeful. Alarming because the number of women who self-score highly on all of these factors is low, yet hopeful because the research provides clear direction as to how we can address these factors and ensure women are educated and competent in all four areas. The McGrath Breast Health Index will be released annually, tracking trends in breastpertise, and providing a means of measuring which factors require additional educational efforts. The McGrath Foundation, in addition to placing McGrath Breast Care Nurses in communities across Australia, is committed to improving breast awareness, particularly among young people. This research shows that knowing your breasts is a lot more than simply being breast aware. We like to say If you grow them, know them! While this research focuses on women, the outcomes are applicable to all people in Australia although it s primarily a disease that affects women, around 150 men are diagnosed with breast cancer each year as well. This research shows that knowing your breasts is a lot more than simply being breast aware. We hope that this research helps people across Australia get a grip on their breast health educate themselves, and have the right conversations, to build a new generation of breastperts. My big dream, my pipe dream, would be for every family in Australia to have access to a breast care nurse and that one day the next generation of Aussies our children will know the importance of checking their breasts and being vigilant and looking after themselves because I don t want our daughters growing up thinking, breast cancer can t happen to me, because I was 31 and I know that it can happen. Petra Buchanan CEO, McGrath Foundation - Jane McGrath With the launch of the McGrath Breast Health Index, we have an important tool that helps us measure progress as a nation, and come closer to realising the entirety of Jane s vision. 3

4 This report not only provides a snapshot in time but highlights the areas of focus required in educational programmes to improve breastpertise over time. INTRODUCTION Jane McGrath s vision of ensuring that every family in Australia experiencing breast cancer would have access to a McGrath Breast Care Nurse also included the belief that improving breast awareness among young people would ultimately lead to better health outcomes. While the majority of women in Australia consider themselves to be somewhat or very breast aware, we know that this awareness doesn t necessarily translate into action. Uptake for governmentfunded mammograms is slightly more than 55 per cent, 1 despite widespread education about the importance of early detection. The McGrath Foundation provides an educational programme for high school students, as well as an app, Curve Lurve, that provides information, resources and reminders about self-checking. Yet, while diagnosis, survival and screening rates can all easily be quantified, there has been no clear and robust measure for breast awareness nor a definition of what this needs to entail in order to effect behavioural change. Getting a Grip: A report into breast awareness among women in Australia is the result of independent nationally representative research commissioned by the McGrath Foundation to develop the McGrath Breast Health Index a measure that definitively provides a benchmark for breast awareness and breastpertise among women in Australia, while also enabling trend tracking on an annual basis. These results highlight a need for people to get a grip on their understanding of breast health, ensure they are best equipped to identify any cause for concern, and are important not only for the McGrath Foundation, but for any organisation or individual working in breast cancer, and every person who may go on to develop breast cancer at some point in their lifetime. 4

5 Carried out by AMR, the McGrath Breast Health Index identifies four key factors that make up what we re calling breastpertise among Australian women: AWARENESS Do they consider themselves aware of their breast health? CONFIDENCE Are they confident in their ability to detect changes in their breasts? KNOWLEDGE Are they knowledgeable about the risk factors for breast cancer? BEHAVIOUR Are they checking their breasts frequently enough to identify any changes? The research also examined how women learn about breast awareness and the most trusted sources of information. This report not only provides a snapshot in time but highlights the areas of focus required in educational programmes to improve breastpertise over time. 5

6 RESEARCH FINDINGS The goal of the research was to gain a robust and thorough understanding of the factors impacting on what we re terming breastpertise, and to identify any common factors that contribute to women scoring higher on the McGrath Breast Health Index. The methodology consisted of fieldwork completed between 27 June and 11 July 2016, with a total sample size of 1,288, comprising 1,189 Australian women aged 16+ and an additional boost of 99 women with daughters aged 10 or older, resulting in a total sample of 512 women with a daughter aged 10 or older. Responses were collected via an online interview and results analysed across a range of demographic and behavioural traits. Quotas and weighting were applied to ensure the sample was nationally representative of the Australian female population, aged 18 and over. Weighting was applied to both the nationally representative sample and the boost of mothers of daughters aged 10+ to adjust for this representativeness. A series of questions were asked about awareness, confidence, knowledge and behaviour in terms of breast health, which were then supplemented by questions relating to age, geography, parental status and experience of breast awareness education. This enabled us to draw conclusions about the characteristics that are more or less likely to make women greater breastperts. The key findings show that, while the majority of Australian women 73 per cent believe themselves to be somewhat or very breast aware, less than a quarter fulfil all four criteria of awareness, knowledge, confidence and behaviour. Knowledge of key risk factors for breast cancer is low, with only 10 per cent who can correctly identify all six of the key risk factors for breast cancer. * This indicates that awareness alone is not sufficient to effect behavioural change to identify potential changes in the breast and seek advice from a healthcare professional. Being aware must be accompanied by confidence, knowledge of risk factors, and frequent checking, in order to make a difference to long-term breast health in Australia. Awareness alone is not sufficient to effect behavioural change to identify potential changes in the breast and seek advice from a healthcare professional. * The six risk factors included were: a strong family history of breast cancer, being a woman, being a smoker, growing older, drinking alcohol, and starting menstruation earlier or menopause later. SAMPLE SIZE OF 1,288 6

7 KEY FINDINGS 73% 73% BELIEVE THEMSELVES TO BE SOMEWHAT OR VERY BREAST AWARE ONLY 15% FULFIL ALL FOUR CRITERIA: AWARENESS, KNOWLEDGE, CONFIDENCE, BEHAVIOUR 15% ONLY10% CAN CORRECTLY IDENTIFY THE KEY RISK FACTORS FOR BREAST CANCER 10% 7

8 THE McGRATH BREAST HEALTH INDEX The McGrath Breast Health Index uses the combination of four criteria awareness, confidence, knowledge and behaviour to create an overall Breast Health Index. The definitions used are as follows: AWARENESS QUESTION To what extent would you consider yourself to be breast aware? INCLUDED IN THE INDEX: Very breast aware Somewhat breast aware INCLUDED IN THE INDEX Correctly identify 4 or more of the below as risk factors: AND KNOWLEDGE QUESTION To what extent do you agree or disagree that the following will make a person more susceptible to developing breast cancer? Strong family history of breast cancer Being a woman Growing older Being a smoker Drinking alcohol Starting menstruation early, or starting menopause late Cannot incorrectly identify 5 or more of the below as risk factors: Using deodorant Wearing an underwire bra Bumping or bruising the breast Having a nipple piercing Topless sunbathing Sleeping in a bra Implants and breast reductions Giving birth Breastfeeding Having large breasts 8

9 With only 15 per cent fulfilling all four criteria, there are huge gaps in the breastpertise of women in Australia CONFIDENCE QUESTION How confident are you that you would be able to detect a change in your breast? INCLUDED IN THE INDEX: Very confident Somewhat confident BEHAVIOUR QUESTION How often would you say you examine your breasts including feeling for lumps or changes? INCLUDED IN THE INDEX: Once a day Once a week Once a fortnight Once a month The McGrath Breast Health Index is calculated by identifying the percentage qualifying for all four criteria: INDEX - % QUALIFYING FOR NUMBER OF CRITERIA 10% 18% 24% 34% 15% 0 CRITERIA 1 CRITERIA 2 CRITERIA 3 CRITERIA 4 CRITERIA The McGrath Breast Health Index reveals that only 15 per cent of Australian women have a high level of breastpertise. However, if the answers to the questions on awareness and confidence are limited to the very response, the percentage drops to two per cent. Most women (73%) consider themselves to be breast aware, with slightly more than half (52%) stating that they check their breasts at least once a month (behaviour). With only 15 per cent fulfilling all four criteria, there are huge gaps in the breastpertise of women in Australia, suggesting that there are significant numbers who may be aware, but not acting on that awareness, or checking their breasts frequently, without being confident that they either know what to look for or that they ll recognise a change in their breasts. 9

10 Women aged were more likely than other age groups to qualify for only one, or none, of the criteria. % WHO QUALIFYING FOR NUMBER OF CRITERIA AWARENESS 73% SELF CONFIDENCE 62% BEHAVIOUR 52% KNOWLEDGE 39% 10 While there were no statistically significant differences in the McGrath Breast Health Index by state, women aged were more likely than other age groups to qualify for only one, or none, of the criteria. The research examined other factors that may contribute to levels of breastpertise including whether respondents had daughters older than 10 years (expecting that they may have had conversations about body image, health and changes through puberty), whether respondents had had conversations with their own mothers about breast awareness, and whether respondents had personal experience of breast cancer either themselves, or someone they knew, being diagnosed with the disease. Perhaps surprisingly, having or knowing someone who had been diagnosed with breast cancer had a minimal impact on fulfilling one or more of the criteria of the McGrath Breast Health Index. Women who had themselves, or knew someone who had been diagnosed with breast cancer, were only marginally more likely than the total Index group to answer more criteria correctly: A three per cent difference in those answering three criteria correctly (37% compared with 34%) A two per cent difference in those answering all four criteria (17% compared with 15%) Women with no experience of either themselves or someone they knew being diagnosed with breast cancer were more likely to meet only one or none of the criteria (36% compared with 28% in the total Index). Women who had had a conversation with their own mother about breast awareness were even more significantly likely to meet all four criteria of the Index 23 per cent compared with 15 per cent of the general population. These women were also more likely to meet three criteria (46% compared with 34%), and also more likely to have had a conversation with their mother about other personal health topics, including menstruation and pap smears. Of those who were mothers themselves, women with a daughter aged 10 years and older were significantly more likely to meet all four criteria (20%) than those who did not have daughters (13%).

11 THE FOUR CRITERIA OF THE McGRATH BREAST HEALTH INDEX AWARENESS Being breast aware is about knowing how your breasts look and feel, and knowing what is normal for you. To what extent would you consider yourself to be breast aware? Slightly fewer than three quarters of Australian women consider themselves to be breast aware, with one in five saying they are very breast aware and slightly more than half somewhat breast aware. Women aged 51 and over were more likely to consider themselves breast aware, while on a state-by-state comparison, Tasmanian women were most likely to consider themselves breast aware (84%) followed by South Australia (79%). Western Australia (69%) and NSW (70%) were the states where women were least likely to consider themselves breast aware. Again, across all age groups and all geographies, women with daughters aged 10 years and older were most likely to consider themselves breast aware (82%). CONFIDENCE How confident are you that you would be able to detect a change in your breasts? Slightly more than six in 10 (62%) of Australian women believed themselves to be somewhat or very confident that they would be able to detect a change in their breasts. Aligning with selfclassification for breast awareness, women aged 51 and over are more likely to be confident they could detect a change, at 72 per cent. No significant differences were seen between states. % CONSIDER THEMSELVES BREAST AWARE BY STATE % CONSIDER THEMSELVES BREAST AWARE BY AGE NSW VIC QLD SA WA TAS 70% YRS 67% 73% YRS 60% 74% YRS 64% 79% YRS 73% 69% YRS 81% 84% 61 YRS AND OVER 85% SIGNIFICANTLY DIFFERENT TO TOTAL SAMPLE OF 95% CONFIDENCE LEVEL 11

12 A substantial number of women incorrectly identified non-key risk factors for breast cancer, indicating a genuine need for greater education in this area. 12 KNOWLEDGE To what extent do you agree or disagree that the following will make a person more susceptible to developing breast cancer? Respondents were provided with a list of 20 possible risk factors, of which six were scientifically proven risk factors for developing breast cancer. Women who correctly identified four or more of these six, AND did not identify five or more non-risk factors, were considered to have good knowledge of risk factors for breast cancer. The six correct risk factors were: Strong family history of breast cancer (however, according to Cancer Australia s Recommendations for the management of early breast cancer in women with an identified BRCA1 or BRCA2 gene mutation or at high risk of a gene mutation, only around 5-10% of breast cancers are due to hereditary / genetic mutations) 2 Being a woman Being a smoker Growing older Drinking alcohol Starting menstruation earlier or menopause later A seventh risk factor, taking the contraceptive pill, was also considered, although it is recognised that this risk only exists while a woman is taking the contraceptive pill, and diminishes completely 10 years after stopping. 3 Starting menstruation earlier or menopause later was the risk factor most women were unsure about; more disagreed than agreed it was a risk factor. Only one in 10 people were unable to identify all six risk factors. Slightly more than one quarter recognised two or fewer risk factors. INCORRECTLY IDENTIFYING NON-RISK FACTORS A substantial number of women incorrectly identified non-key risk factors for breast cancer, indicating a genuine need for greater education in this area. More than one third of respondents believed (incorrectly) that sunbathing topless (36%), or having breast implants or reductions (36%), are risk factors for developing breast cancer. Other myths that seem to be accepted as truth by a substantial minority of the female population include: Bumping or bruising the breast (33%) Sleeping in a bra, especially with underwire (20%) Having a nipple piercing (19%) Using deodorant (17%) Interestingly, women who consider themselves breast aware are more likely to identify non-risk factors as risk factors, than those who don t consider themselves breast aware. This highlights a significant challenge in that there are a large portion of women who consider themselves breast aware, but are lacking the right knowledge about breast cancer risk.

13 1 STRONG FAMILY HISTORY 2 BEING A WOMAN 3BEING A SMOKER THE SIX CORRECT RISK FACTORS FOR BREAST CANCER GROWING 4 OLDER 6 STARTING MENSTRUATION EARLIER / STARTING MENOPAUSE LATER 5 DRINKING ALCOHOL 13

14 BEHAVIOUR How often would you say you examine your breasts, including feeling for lumps or changes? More women are confident that they could detect a change in their breasts (62%) than the number of women who check their breasts regularly (52%). Generally, it s recommended that women conduct a self-check once a month, around the same time in their menstrual cycle, to account for any regular hormonal changes. The proportion of women who check regularly is largely consistent across age groups and geographies, although women with daughters aged were more likely to check regularly (62%, compared with the population average of 52%). Approximately one third of those who don t check their breasts regularly say that this is because it has never occurred to them to do so. One in five indicate that they don t know how to, or they forget. Three in 10 women have been to their doctor with a concern about their breast, most as a result of them personally noticing a change. Women who consider themselves breast aware are more likely to check their breasts regularly and be confident they could detect any changes than those who don t consider themselves breast aware. Yet 23 per cent who consider themselves breast aware don t feel confident they could detect any changes in their breasts. Of those who check their breasts once a month or more often, 78 per cent were confident they would be able to detect a change in their breasts, compared with only 45 per cent of those who do not check as regularly. Experts recommend that women check their breasts at the same time each month, a few days after their period has ended. This is because hormonal fluctuations during the menstrual cycle can result in changes to the breasts, so checking at the same time each month can account for these normal changes. 14

15 CONVERSATIONS ABOUT BREASTPERTISE There has been a significant shift as new generations of women learn of the importance of being breast aware. Women aged 51 years or more are most likely to have learned from a healthcare professional. Women aged were most likely to have gained their information from media sources (TV, radio, magazines), while the youngest age group (16-19) learned from their mothers. Women with pre-teen or teenaged daughters were more likely than others to have learned about the importance of being breast aware from their mothers or at school. Women overwhelmingly believe that their mothers are best placed to first educate young women on the importance of being breast aware (49%) more than any other potential source of information, including healthcare professionals (31%). Women with pre-teen or teenaged daughters were more likely than any other group to believe that mothers were best placed to raise the importance of being breast aware (57% compared with the total of 49%). Despite this, only one quarter of Australian women have had a conversation with their mother about breast awareness, with more recalling conversations with their mother about table manners or clothing and hairstyles than breast awareness. Other personal health concerns featured more prominently, with menstruation as the primary topic (still, only 55% of women had had a conversation with their mother about menstruation). Conversations about sun safety, sex and sexual health, alcohol and drugs, choice of partner and pap smears were all more common topics for conversation than breast awareness. Teenaged women (16-19 years) were twice as likely to have had a conversation with their mother about breast awareness (35%) than those aged 61 and over (17%). For more than half of women who had had such a conversation, the topic was introduced by their mother. SOURCES OF INFORMATION TOTAL YRS AGE YRS YRS YRS YRS 61 YRS+ THEIR MOTHER 49% 43% 39% 52% 61% 45% 50% FAMILY MEMBER OTHER THAN THEIR MOTHER 4% 11% 6% 5% 2% 4% 2% THEIR SCHOOL TEACHER 6% 8% 11% 11% 3% 3% 3% HEALTH PROFESSIONAL (EG:DOCTOR, NURSE) 31% 24% 29% 23% 24% 36% 41% OTHER 1% 0% 1% 0% 2% 1% 1% NOT SURE 9% 14% 14% 8% 8% 10% 3% SIGNIFICANTLY DIFFERENT TO TOTAL SAMPLE OF 95% CONFIDENCE LEVEL 15

16 In 2016 only 15 per cent of women in Australia can be considered breastperts, the challenge is to move people closer to being breastperts over time. When looking at the women who were mothers themselves, of those who had daughters older than 10 years slightly more than half (53%) had had a conversation with their daughter about breast awareness. Women with daughters aged 10 years and older were almost twice as likely to have had a conversation with their own daughter about breast awareness if their mother had talked to them about breast awareness (81% compared with 45%). A generational shift is taking place. While only a quarter of all Australian women have had a conversation with their mother about breast awareness, women who are mothers of daughters aged 10 years and older now are twice as likely to have a conversation with their daughters about breast health. While this number is still only around half (53%), it highlights the important role mothers have in educating their daughters about breast health, and how crucial it is that the right information is shared. CONCLUSION The McGrath Breast Health Index highlights for the first time that breast awareness is only one of four key factors that contribute to breastpertise. Confidence that women will recognise changes in their breasts, knowledge of the risk factors for developing breast cancer, and behaviour in frequency of checking breasts are all equally important. Looking specifically at the four elements comprising the McGrath Breast Health Index, there is a clear disconnect between women s knowledge of risk factors and their self-perception of awareness, confidence and self-reported behaviour. Taking into consideration the importance of conversations among mothers and daughters in improving breast health understanding, this may have serious ramifications if it means the incorrect information is being shared with confidence. With the McGrath Breast Health Index highlighting that in 2016 only 15 per cent of women in Australia can be considered breastperts, the challenge is to move people closer to being breastperts over time. Recognising that awareness is the most common factor acknowledged by women in Australia indicates that education needs to focus on building confidence, increasing knowledge and improving behaviour. The need to build an accurate knowledge base of risk factors for breast cancer is of obvious importance. Over the years, the Index will provide an accurate tracking measure on breastpertise in Australia. At the McGrath Foundation, our mission is supporting people with breast cancer through providing McGrath Breast Care Nurses in communities across the country, and encouraging young people to understand more about their breast health, so they can identify any changes in their breasts early enough to get the best possible chance at survival if they are diagnosed with breast cancer. The McGrath Breast Health Index helps us measure and track that, and helps us achieve Jane McGrath s vision. References 1 Australian Institute of Health and Welfare. Australian Institute of Health and Welfare and Australian Government Department of Health and Ageing for BreastScreen Australia; Canberra: BreastScreen Australia monitoring report , Cancer Series. 2 Cancer Australia (2014). Recommendations for the management of early breast cancer in women with an identified BRCA1 or BRCA2 gene mutation or at high risk of a gene mutation. Accessed on 17 August 2016 at Accessed on 26 August

17 Sherree was 35 when she was diagnosed with breast cancer and underwent a double mastectomy and hysterectomy. She talks to her daughters regularly about the importance of understanding your breasts, and all three girls are now breastperts.

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