1. SYDNEY MEDICAL SCHOOL
Pap smear rates among Australian
community-attached lesbian and
bisexual women: some good news
but disparities persist
Catriona Douglas
School of Medicine and Dentistry, University of Aberdeen & Raigmore Hospital
Rachel M Deacon
Discipline Addiction Medicine, University of Sydney & South Eastern Sydney LHD
Julie Mooney-Somers
Centre for Values, Ethics and the Law in Medicine, University of Sydney
Presented at Lesbian, Bisexual & Queer Women's
Health Conference, 27 March 2015
http://www.vac.org.au/WomensConference
2. KEY MESSAGES
LBQ women are at risk of cervical cancer
Aust community-attached LBQ women have Pap smear
rates at similar level to general population
Predictors of Pap smear testing suggest women who’ve
never have sex with men & women not out to a regular
GP & women not having STI tests are being missed
Several ways to address under-screening
2
3. Pap smear testing is important
Cervical cancer is the second most prevalent
cancer among women worldwide.1,2
Papanicolaou (Pap smear) test detects pre-
cancerous changes on the cervix
Produced dramatic decrease in the incidence of
and mortality from cervical cancer worldwide
Aust – 33% reduction in incidence of cervical
cancer in 12 years after program launch10
3
4. Screening recommendations
Broad agreement that all sexually active women should be screened
regularly
US: first test age 21 then 3 yearly until 30, then 5-yearly to 64 years
UK (NHS): first test age 25, then 3 yearly until 49, then 5-yearly to 64 years
Australia: every 2 years between the ages of 18 and 70 years
4
Gen pop screening rate in US (3 year) and
UK (3.5 year) = 71 to 82%
Gen pop screening rate in Aust = 70%
5. Non-attendance
Non-attendance 2nd most attributable risk factor for invasive cervical
cancer8,9
Higher risk of late diagnosis of cervical cancer -> a poorer prognosis.9
5
6. Pap smear testing is important for LBQ women
Main risk factor for CC is human
papillomavirus virus (HPV) (99% of cases)
- HPV spread during sexual contact
- Is HPV transmitted during sex between women?
- Research: present in WSW15,16 but sex with men
- Research: present with no sexual history15,17,18
- Likely that HPV can be transmitted
- Penetrative sexual practices are common15
Other risk factors: lower age of first sexual
contact, high number of sexual partners, sex with
men, smoking and obesity (LBQ women higher
levels of smoking and obesity8,12)
6
7. Pap smear testing for LBQ women – policy & practice
Australian national guidelines:
‘All women with a cervix who have
ever had sex are at risk of cervical
cancer’ 5
Cervical Cancer Screening Programs
raise LBQ on websites, or have a
LBQ-specific page.
Several information campaigns
7
8. Pap smear testing for LBQ women – outcomes
US and UK - LBQ women consistently less
likely than gen pop to attend for screening
within the recommended time intervals.
US/UK screening rates = 44–62%.2,11–14
ALSWH*: 26% young L women never had a
Pap smear vs. 9% young H women
8
9. Analysis aims
1. Have the rates of screening among LBQ women changed over the
period of the survey (10 years)?
2. How do rates among LBQ women compare to general NSW population?
3. Among LBQ women, what characteristics make them more likely to ever
attend for screening?
9
Investigate Pap smear testing rates among LBQ women in Sydney
10. METHODS
Biennial community survey of health and wellbeing of women who engage
with metropolitan LGBTQ communities
Run since 1996
Collaboration between ACON and researchers at UNSW & USYD
Questions about Pap smear testing used since 2002 (data = 2002 to 2012)
10
Sydney Women and Sexual Health (SWASH) survey
11. SAMPLING
Repeated cross-sectional survey; February (MG) every 2 years
Identify venues and events with high concentration of LBQ women
Fair Day a core recruitment event at every iteration
All women willing to respond were invited to self-complete a two-page
questionnaire
Easy to refuse or avoid the survey recruiters
11
Sydney Women and Sexual Health (SWASH) survey
12. Analysis Sample
All completed surveys 2002 and 2012
Excluded from analysis:
- aged less than 18 years or if an age was not provided (n = 246)
- lived outside NSW (n = 237)
- had missing data on the variables examined (n = 221)
Final sample: 4083 surveys
12
13. Who are these women?
79% lesbian/gay - 11% bisexual - 10% queer/other
Proportion identifying as lesbian decreased: 87% to 69
Median age 32 years; 40% 25–34 years
83% in either full-time or part-time employment
51% a university degree
13
14. Engagement in practices relevant to CC
Sexual practices
- 82% sexually active with a woman in the last 6 months (2% never)
- 82% used fingers or hands with a woman in the past 6 months
- 53% used sex toys with a woman in the past 6 months
- 64% ever sexually active with men (the majority more than 6 months ago)
Health practices
- 78% regular GP or attended the same general practice
- 62% ‘out’ to their regular GP about their sexuality
- 36% current smokers
14
15. Have the rates of screening changed over time?
72% screened < 3 years ago (range 69–75%)
28% overdue for screening = 11% 3+ years and 17% never screened
No significant variation in ever screened (range 83–84%)
No significant variation in never screened (range 16–17%)
Slight variation around timeliness:
- 69–75% < last 3 years
- 7–14% screened > 3 years
15
2002-2012 surveys n=4083
16. How do LBQ rates compare to NSW gen pop?
SWASH 2010 3 yr participation rate LBQ women aged 20-69yrs = 77%
NSW Cancer Institute 2009-10 gen pop aged 20-69yrs = 70%
LHD where the majority of SWASH sample resides:
- South Eastern Sydney = 73%
- South Western Sydney = 65%
- Sydney = 68%
16
2010 survey n=768
17. What characteristics make LBQ women more likely to
ever attend for screening?
Factors sig associated with ever having had a Pap smear test:
› ever having had STI test (OR 3.34; CI 2.05–5.43)
› being ‘out’ to a regular GP vs not having a regular GP (OR 2.47, 95%
CI 1.44–4.24)
› ever having had sex with men (OR 2.29; 95% CI 1.41–3.72)
› education post Year 12 (OR 1.85, 95% CI 1.11–3.10)
› increasing age (odds ratio (OR) 1.13 per 1-year increase, 95% CI 1.09–
1.17)
Sexual identity and employment status n.s.
17
2012 survey n=657
18. Good news
18
Similar proportions of LBQ women screening vs. gen pop in NSW
Caution: self-report vs clinical report; SWASH demographics
Very different to disparity in rates seen in US/UK findings
Caution: access and guidelines different
19. Concerning news
19
16-17% of LBQ women never had pap smear
unchanged 2002-2012
2.3 times less likely if never had sex with men
› Perception that LBQ not at risk of CC? But knowledge is very high*
ACTION: Messaging focus on identity not practice: ‘lesbians need pap
smears too’ Vs ‘women who haven’t had sex with men need pap smears
too’
› Dissuaded by GP**
ACTION : GP education; revisit older LBQ women and correct advice
20. Concerning news
20
3.4 times less likely if never had STI test
sexual/reproductive health not part of consult for sig proportion?
ACTION : Cues to action? Detach Pap smear from sexual/reproductive
health; Promote as part of a regular health and wellbeing check-up (blood
pressure checks)
Further research: how LBQ women with no sexual history with men are
being routinely under-screened
21. Interesting news
21
2.5 times more likely if out to a regular doctor vs no regular doctor
Regular doctor only increased by 1.5 so relationship + disclosure
+ Women developing relationship with GP, seeking test
+ Doctors creating safe and welcoming environments
- Women avoiding test, worried about coming out, risk of discrimination
› Research: disclosure -> utilisation, prevention, satisfaction
ACTION : Culturally supportive and safe environment matters, what can we
do to facilitate it?
22. An opportunity
National Cervical Screening Program renewal process
HPV testing 5-yearly for women aged 25–64 years
NOW: only receive reminders if have had a Pap smear test before
PROPOSAL: population-based invitation and recall system. Every LBQ
woman would receive a personal invitation to test, regardless of history of
testing or assumptions (by a GP) about sexual history and risk CC
ACTION : Inclusive, careful language for LBQ & women who have not had
sex with men
22
23. KEY MESSAGES
LBQ women are at risk of cervical cancer
Aust community-attached LBQ women have
Pap smear rates at similar level to general
population
Predictors of Pap smear testing suggest women
who’ve never have sex with men & women not
out to a regular GP & women not having STI
tests are being missed
Several ways to address under-screening
23
24. Want to know more?
Douglas, C, Deacon, R, Mooney-Somers, J (2015) Pap smear rates among
Australian community-attached lesbian and bisexual women: some good
news but disparities persist. Sexual Health
http://www.publish.csiro.au/view/journals/dsp_journals_pip_abstract_scholar
1.cfm?nid=164&pip=SH14210
Pre-copyedited, author-produced version: http://hdl.handle.net/2123/12702
All SWASH reports:
http://www.acon.org.au/research/news/sydney-women-and-sexual-health
Contact: Julie.MooneySomers@sydney.edu.au
24
Editor's Notes
http://www.feministe.us/blog/archives/2009/06/18/well-gee-i-think-ill-go-get-that-pap-smear-after-all/
This image was posted on Sociological Images, and was created by BC Cancer Agency. The page where the ad was found has been taken down, but here’s a cache. Further, according to comments over at the Sociological Images post, these ads have been seen all over Vancouver.
Singapore Cancer Society
http://globalvoicesonline.org/2013/05/19/lift-your-skirt-save-a-life-cervical-cancer-ad-divides-singapore/
2003 cohort data from young Australian women
Actual image used by WA dept of health on their lesbian page NOTICE OLY ONE WITH A WOMAN NOT ON HER OWN!
http://www.healthywa.wa.gov.au/Healthy-WA/Articles/F_I/Having-a-Pap-smear-is-not-always-easy-for-lesbians
Backwards stepwise model with removal probability set at P < 0.05 was used.
dichotomous variables
lesbian–bisexual/queer/other
achieved post-school qualification–achieved lower qualification
sex with men ever–sex with men never
STI test ever–STI test never
Modified version of the Time-Location convenience sampling (like Gay Community Periodic Survey)
Venue-based method employed for populations that cluster in locations
So no change
Pretty good in comparison
*95-97% correct knowledge
**Aust study healthcare providers believed lesbian women to be at lower risk of cervical cancer,34 with 9% of 490 Australian LBQ women reporting they had received this advice.35
UK study found 1/5 LBQ women who had never had a Pap smear test had been told they were not at risk of cervical cancer.36
These findings echo earlier research in the US.14
not having, or have never had, sex with men may indeed have less need to discuss sexual and reproductive health with their GP
requiring access to contraception
The need for contraception has been framed as a cue to action for Pap smears
Australian guidelines for GPs provide mixed messaging on this issue.31 Pap smear tests are framed as part of a suite of planned general health checks for women aged 45–64 years, as ‘pre-conception care’ for women aged 15–49 years and for the early detection of cervical cancer in women aged 18–70 years (where it is repeatedly linked to sexual activity). It is only in this latter section that the guidelines refer to women with female sexual partners also being at risk of cervical cancer. The same guidelines note that GPs need to be able to explain to patients why a particular test is relevant to them.
A US study found that among lesbian women who were not regular screeners, there was a low perception of the benefits of screening (and a high perception of barriers to screening). Framing Pap smear tests as a routine screen for the early detection of cervical cancer in all women could help GPs explain to their LBQ patients the benefits (i.e. not simply pregnancy preparation) of these tests for their health. Further research to understand specifically how LBQ women with no sexual history with men are being routinely under-screened is necessary to understand and address this issue.
The recent National Cervical Screening Program renewal process undertaken by the Medical Services Advisory Committee recommended significant changes to the cervical screening regime in Australia. Specifically, primary HPV testing 5-yearly for women aged 25–64 years; changes are slated to take effect after 2016.38 There is no reason to think these changes will detrimentally affect cervical screening attendance for LBQ women, although recent commentary emphasises the need for successful engagement of women at 25 years of age.39 However, one change does offer hope for improvement; currently, women receive Pap smear test reminders if they have had a Pap smear test in the past, when they are overdue for screening and have consented to be on the Pap Test Register. The renewal recommended a population-based invitation and recall system, which means all women would receive an invitation to test, regardless of their history of testing.38 The benefit of this proactive approach is that every LBQ woman would receive a personal invitation to test, regardless of assumptions (e.g. by a GP) about a woman’s sexual history and risk of cervical cancer.
Not quite. Is this clearer:
“currently, women receive Pap smear test reminders if they have had a Pap smear test in the past, consented to be on the Pap Test Register and are overdue for screening”
Rewording here OK?
http://www.feministe.us/blog/archives/2009/06/18/well-gee-i-think-ill-go-get-that-pap-smear-after-all/
This image was posted on Sociological Images, and was created by BC Cancer Agency. The page where the ad was found has been taken down, but here’s a cache. Further, according to comments over at the Sociological Images post, these ads have been seen all over Vancouver.
