1. Who is at risk of under-screening? (and what can we do about it?)
Before we begin, I just want to acknowledge that, as you would all know so very well from your experience working in general practice, that we simply will never transition all women into screening, and that should not be our goal. The participation target for the BreastScreen program is 70%, and what we can aim to do is ensure that you, as primary care providers, have the data, educational and counselling tools you need to support women to make informed decisions about screening.
This session is about understanding a little bit more about some of the reasons women don’t screen, and what we may be able to do in response.
Healthy North Coast Ltd (ABN: ), trading as North Coast Primary Health Network

2. BREAST
Let’s start with Breast cancer screening, I’d like to hear from you about how you think you area is performing with breast cancer screening rates and which types of women you think are probably most at risk of under-screening?
(Meg to write down what is said on butchers paper/or white board)
We went through a similar exercise with the practices who have been participating in the women’s cancer screening collaborative, and as you would expect we have fairly close alignment between what we know about screening from the research and what practices saw going on locally.
So lets have a look at what we know.

3. So let’s start by looking at screening rates by local government area in the NCPHN footprint. This data
Over 20% of women in Tweed and Bellingen have never screened with Breast Screen.Of Local Government Areas with culturally and linguistically (CALD) diverse populations larger than 200, Tweed Heads, Lismore and Byron have the lowest screening rates of CALD women, and are below the state average.
Data source: Cancer Institute NSW, Reporting for Better Cancer Outcomes Performance Report 2016: North Coast Primary Health Network Internal access.
State average

4. Project overview Project undertaken by Cancer Institute NSW and Urbis
Qualitative component, focussing mainly on other jurisdictions
Quantitative component focussing on NSW and BreastScreen NSW
BreastScreen NSW cohort analysis
50-62 yr old women screened with BreastScreen NSW July June 2009, followed up for 2 screening rounds to 2014
NSW population Health survey 2013
All respondents were asked when they were last screened, and what prompted them to do so. This constitutes single-screen follow up
Just for context, the information I am presenting is largely from work undertaken by the Cancer Institute NSW.

5. Before we dive into what the Cancer Institute research reported, I wanted to put a little bit of a theoretical framework at the top of our minds, whilst no model is perfect I think it can be a helpful lens through which to thinks about what we see in the research, and what it means for how we respond.
The HBM is based on the understanding that a person will take a health-related action if that person:
Have a perception of susceptibility, feels that a negative health condition can be avoided,
has a positive expectation that by taking a recommended action, he/she will avoid a negative health condition and
believes that he/she can successfully take a recommended health action
The HBM was spelled out in terms of four constructs representing the perceived threat and net benefits: perceived susceptibility, perceived severity, perceived benefits, and perceived barriers. These concepts were proposed as accounting for people's "readiness to act.“
So, let’s have a look at what we know about what holds women back from breast screening.

6. Attitudes and beliefs and their influence on screening
From the literature review the following factors were identified as barriers to screening:
Lack of family history of breast cancer means women think they are not at risk
Fear and concern about breast cancer and fear the results.
Less likely to hold positive attitudes towards preventative health programs, or in efficacy of screening
Cultural barriers
Previous poor experience
Fear and concern about screening may be enhanced by campaign messages that highlight the prevalence of breast cancer
So keeping in mind what we heard about the health belief model, here are the attitudes and beliefs that were identified as negatively influencing screening behaviours
We can motivate change by enhancing the understanding of the pros and diminishing the value of the cons. The majority of at-risk populations are not prepared for action and will not be served by traditional action-oriented prevention programs – what this means is a simple “screening is important” educational message won’t work if it doesn’t address the individual womens view of the pros or cons of screening, but a few prompting questions may give us insight into reasons for not screening.
I’d like to hear some idea on how you would respond to a woman who says (go through the list)
Helping people set realistic goals, like progressing to the next stage, will facilitate the change process – you may just ask them to read a particular pamphlet.
December 2014

7.   
Younger age group – 27% of under screeners are ‘low service users’ – active women, who feel on top of their health, maybe busy with work and kids
Strong correlation here with health literacy – those who were in Taya’s session today would have heard 60% of Australians don’t have the health literacy skills they need, 40-80% of health information is forgotten immediately!
3 points, may need to be a conversation over multiple visits – change takes time

8. CERVICAL
Let’s now take a look at cervical cancer screening,

9. WHO?
I’d like to hear from you about how you think your areas is peforming in relation to certivical screening and which types of women you think are probably most at risk of under-screening?
(Meg to write down what is said on butchers paper/or white board)
Ok, let’s take a look at what we know…
18/09/2018

10. State average 56%
LOCAL GOVERNMENT AREA NAME
Cervical screening participation Age
Ballina
66.3
Bellingen
58.7
Byron
74.1
Clarence Valley
55.5
Coffs Harbour
58.1
Kempsey
54.5
Kyogle
Lismore 54
Nambucca
57.4
Port Macquarie-Hastings
64.6
Richmond Valley
53.2
Tweed
57.5

11. Who is under-screening?
Women who don’t speak English at home
Less likely to be able to identify that Pap test as a means of early detection
CALD women less likely to know recommended frequency
Under 29s
More likely to never have screened and to know correct frequency
LGBQTI
20 per cent of LBQ women in Sydney have never had a Pap test.
40 per cent of young LBQ women have not had the HPV vaccine or taken the full dose.

12. Who is under-screening?
Women with a Disability
Women with intellectual disability (IDD) twice as likely to have not been screened for cervical cancer
Many women with IDD do experience sexual relationships
Indigenous women
Aboriginal women are four times more likely to die from cervical cancer than non-Aboriginal women.
Over 60s - Most likely to be lapsed

13. What’s are the barriers?
“I’m not at risk”
Cervical cancer seen as rare, and not urgent
“I’m too embarrassed”
Younger women, Aboriginal and CALD women
Feeling of dread
Don’t want to go to usual GP
“I’m not sexually active”
Promiscuity seen to be a cause by older women
Assume testing can stop if sexual activity has stopped
18/09/2018

14. What’s are the barriers?
“But…”
Doubt that screening does prevent cervical cancer
Poor understanding about the link between HPV and Cancer
Intellectual disability
Perceptions women with disability are not sexually active
Challenges ensuring informed consent from women with intellectual disability
18/09/2018

15. Enablers - Health Care Professionals
Many women stated they depended on the reminder letter to prompt them to make an appointment.
The NSW Pap Test Register receives ~ 200 return to senders per day!
some suggesting they do not prompt first time screeners or remind patients enough to have Pap tests.

16. IDEAS? Prompts: opportunities around self swab? Pro-active education.
(Meg to write up on white board)
18/09/2018

17. No need to go solo...and small steps matter
So we have a great list of ideas for action, and I want to emphasise the support network that is around you… |

18. 18/09/2018

19.
December 2014

21. Same-sex attracted women have been identified as an under screened and high risk population for breast cancer. Research has indicated that this may be due to several factors including higher smoking and risk-drinking rates and lower use of oral contraceptives.
ACON is a great LGBQTI health organisation running #talktouchtest and launching a social marketing campaign targeting same sex attracted women and trans-gender men who have a cervix to correspond with the launch of the new cerv screen prog.
Issues to consider are overcoming misperceptions that women who have sex with women are not at risk of HPV and ensuring your practice teams have the skills required to ensure your service is a safe place for same sex attracted women and transgender men with a cervix to have their health needs, including cervical screening met.
Edda Lampis
Community Health Promotion, ACON Northern Rivers:

22.
18/09/2018

23. The Pink Sari Project external is working to increase the number of women in Indian and Sri Lankan communities in NSW being screened for breast cancer.
Through community events and social media campaigns, the project is making a difference to women across NSW.
Since launching in September 2014, the grassroots movement has been successful in improving the knowledge of breast cancer and breast screening for women in these communities.
It empowers them to take care of their health for themselves and their families.
Recent data highlights attitudes are already starting to change: BreastScreen NSW recorded a 17 per cent increase in breast screening rates for Indian and Sri Lankan communities in NSW from 2015– to

24. Approximately
60%
of Australian adults do not have the level of health literacy needed to understand and use day to day health information.
Patients remember and understand less than half of what clinicians explain to them
Source: National Statement on Health Literacy, ACSQHS;

25. What is coming….
6 monthly reports to PHN – participation rates at LGA level (3 screening programs)
GPs request patient lists from BreastScreen
Electronic Messaging – BreastScreen results in HL7 format
Renewal resources – for practitioners and women (printed, online, videos – some translations) |

26. Consumer Research: Understanding under-screening on the North Coast
Healthy North Coast Ltd (ABN: ), trading as North Coast Primary Health Network

27. Purpose
To better understand barriers and enablers to cervical and cancer screening amongst North Coast women
Recognising that for some women, those most at risk of under-screening, reasons for screening may be complex.
This research is a support piece for general practice and aboriginal medical services. The end result will be easy to ready summaries that we hope are simple to turn into action for both practices and for those of us who serve as the primary care support network.
1. Australian Bureau of Statistics, Census of Population and Housing: Quick Stats, [Online] Available at [Accessed March 2016].

28. Identified populations
Early 50’s Rural women Women with Indian heritage Aboriginal women Women with disabilities Women with mental illness (key informant interviews)
Quite consistent with the literature on women at risk of underscreening.
Recognise other groups such as low SES, LGBQTI, women with chronic conditions

29. Qualitative research
Provides ‘rich’ data
Not representative
Question guide based on principles of the health belief model

30. Completed so far Port Macquarie
Women 30-40, lapsed; women regular
Woolgoolga
Indian women 40-60, regular and never or under
Ulong
Women 50-59, never or under (some regular)
Tweed
Key informant interviews – women with mental illness

31. Preliminary findings – Port Macquarie
Cancer seen as a big burden on family
Reminders seen as helpful
Cervical seen as less understood or promoted
Have a GP that could be trusted important
Not having regular GP was a barrier
Older-aged women believed that getting cancer would place a considerable burden on their lives and their families. This included economically.
Reminders and invitation letters were highly regarded and important facilitators for prompting screening.
Younger women expressed less urgency in maintaining regular cervical screening and cervical screening was not a high priority for them.
For some young women, it was felt that this was due to little awareness or discussion about cervical cancer amongst their friends, peers and within the community generally.
These women felt that compared to breast cancer, very few people talk about cervical cancer, it was less ‘visible’ in terms of community promotions, media coverage and special health or charity event days.
Other younger-aged women reported having a GP whom they could trust, was paramount to their decision to have a Pap smear test.
Not having a regular GP or no GP at all impacted on young women’s cervical screening behaviour due to their reliance on a GP to remind about screening.

32. Preliminary findings – Woolgoolga
Good health seen as individual’s responsibility
Strong negative emotions at the idea of cancer
Poor knowledge – especially among women on 457s
Early detection primary motivator
High regard for government screening programs and GPs
The concept of ‘good health’ was considered an individual‘s responsibility. Diet, exercise and having a stress free lifestyle were key contributing factors for a healthy (happy) life.
There were strong negative emotions expressed at the prospect of getting breast and cervical cancers. However, the women were optimistic that if caught early, both types of cancers could be successfully treated.
Poor knowledge was found regarding:
The causes of cervical and breast cancers;
Screening procedures; and
Local services available for screening.
The early detection of breast cancer and cervical cancer was the primary motivation for Indian women’s regular participation in the breast and cervical screening programs.
The high regard the women held for: (1) the Australian Government (for participation in the BreastScreen program) and (2) GPs (for participation in cervical screening) were other notable enablers for their screening participation.

33. Preliminary findings – Ulong
Early detection seen as key
Reasons for delay:
Availability
Negative past experience
Limited knowledge
Reminder letters and prompts welcomed
Hearing about others developing cancer motivating
There were strong negative emotions expressed at the prospect of getting breast or cervical cancers. However, the women were optimistic that if caught early, both types of cancers could be successfully treated
Most women reported delaying screening due to:
Screening considered an ‘inconvenience’ or a disruption to their daily life, requiring considerable planning and preparation;
The location and availability of the BreastScreen service and GP access; and
Previous negative past cancer screening experiences.
Another key barrier for regularly screening was limited knowledge about breast and cervical cancer.
In many instances cancer knowledge was generated from anecdotal stories
The efficacy and safety of breast and cervical screening tests was also questioned by some women.
The women considered early detection of breast cancer and cervical cancer the primary motivation
The women welcomed prompts and reminder letters
Hearing about others getting these types of cancers, and especially breast cancer was also a significant prompt for the women to screen.

34. Preliminary findings – Tweed
Negative past experience
Low literacy/exposure/opportunities to talk with other women
Contact with GPs focused on other areas
Access issues
Provider inexperience in screening women with disabilities
Attitudes towards breast and cervical screening may be impacted by: past experiences of physical and sexual abuse, Negative experiences and contact with the medical profession.
Some women have limited knowledge about breast and cervical cancer and the importance of screening for these cancers. This may be due to:
Little exposure to health information about breast and cervical cancer and available screening programs;
Low literacy and limited capacity to understand and interpret information about breast and cervical cancer and screening programs;
Restricted access to information and opportunities to talk to other women about women’s health issues due to their living circumstances; and
I nformation not provided in accessible formats.
The attitudes of carers and family members may influence women’s perceptions of the risks of getting breast and cervical cancer and women’s motivation to participate in screening programs.
Contact with GPs may mainly focus on the health care and ongoing treatment associated with the woman’s health issue rather than on other general women’s health issues.
Attitudes of GPs, health practitioners and practice staff and their inexperience with women with a disability may influence women’s attitudes to attending appointments for breast and cervical screening.
A range of access issues can negatively impact on women’s ability to attend and participate in a screening appointment. These may include:
Physical and structural issues associated with the service’s premises and consulting rooms;
Inappropriate screening equipment that cannot be adjusted to meet the needs of women in wheel chairs or other women with physical disabilities.

35. Where to from here? Complete research in Tweed, Casino and Lismore
Finalise research findings – including recommendations for action
Turn findings in action - easy to read summaries, active dissemination, NCPHN support actions