12. HPV screening strategies for Aboriginal and Torres Strait Islander women

Cervical cancer incidence and mortality rates are higher among Aboriginal and Torres Strait Islander women than non-Aboriginal and Torres Strait Islander women.[1]

The current National Cervical Screening Program (NCSP) does not make separate policy recommendations for Aboriginal and Torres Strait Islander women. Limited available evidence on participation in cervical screening by Aboriginal and Torres Strait Islander women suggests that they are under-screened.[2,3] The Australian Government Department of Health recognises that there are cultural, linguistic and access barriers to cervical screening for these women.[1]

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Systematic review evidence

The systematic literature search identified no randomised or pseudorandomised controlled trials that examined modified screening strategies for Aboriginal and Torres Strait Islander women, compared with the strategy recommended for the general population: primary human papillomavirus (HPV) test-based screening with partial genotyping every 5 years for women aged 25–69 years, immediate referral to colposcopy for women with a positive oncogenic HPV (16/18) test result, and cytology triage for women with a positive oncogenic HPV (not 16/18) test result.

The search strategy and inclusion and exclusion criteria are described in detail in the Technical report.

General literature review evidence

In the absence of any direct evidence from the systematic review, a general review of the literature was performed to identify current evidence-based clinical practice guidelines for cervical screening, and studies evaluating screening strategies, for Aboriginal and Torres Strait Islander women.

No relevant evidence-based clinical practice guidelines based on systematic reviews of evidence were identified. No studies were found that directly compared alternative screening strategies for Aboriginal and Torres Strait Islander women. A general literature search was also conducted to quantify the relative risk of and burden of cervical cancer among Aboriginal and Torres Strait Islander women, compared with the general Australian female population. The search strategies and findings are described in detail in the Technical report.

The literature review made the following findings:

A national retrospective study found that, between 1998 and 2005, the age-standardised incidence rate for cervical cancer was 2.7 times higher (95% confidence interval 2.2–3.2) for Aboriginal and Torres Strait Islander women (20 per 100,000) than for non-Aboriginal and Torres Strait Islander women (7 per 100,000).[4] In 2011–2015, the age-standardised incidence rate of cervical cancer improved somewhat, but was still 2.2 times higher for Aboriginal and Torres Strait Islander women (13.9 per 100,000) than for other Australian women (6.4 per 100,000).[5] Chapter 1. Cervical cancer in Australia shows incidences of cervical cancer and cervical cancer outcomes by Indigenous status. See also the tables in the literature review report.

There are no current or previous national data on screening participation by Aboriginal and Torres Strait Islander women. This is primarily because Aboriginal and Torres Strait Islander status was not recorded routinely on pathology forms (the primary source of data for previous state-based Pap test registers) and recording of Indigenous status on the National Cancer Screening Register (NCSR) is incomplete. [1,6] The renewal of the NCSP provided an opportunity to correct this situation. However, this continues to be a challenge and requires a coordinated strategy involving primary health care, pathology practices, Indigenous communities, other stakeholders and the NCSR.

National data from primary healthcare organisations funded by the Department of Health to provide services to Aboriginal and Torres Strait Islander people show that, in December 2013, 32% of the Aboriginal and Torres Strait Islander women who were regular clients of these services had undergone a cervical screening test in the previous 2 years, 40% had been tested in the previous 3 years, and 46% had been tested in the previous 5 years.[1] However, these records may not capture screening visits if clients had undergone screening outside their usual primary healthcare organisation.[1]

A cross-sectional study reported that the age-adjusted prevalence of oncogenic HPV genotypes was similar for Aboriginal or Torres Strait Islander women and non-Aboriginal and Torres Strait Islander women, both overall and in each age group (31.3% versus 30.0% respectively, overall).[7] The prevalence of HPV 16/18 was also similar in each age group for Aboriginal or Torres Strait Islander women and non-Aboriginal and Torres Strait Islander women, however oncogenic HPV (not 16/18) types were more common in Aboriginal or Torres Strait Islander women aged 31–40 (35.0%) than in non-Aboriginal and Torres Strait Islander women the same age (22.5%).[7] The prevalence of HPV DNA (including oncogenic and non-oncogenic types) was higher for Aboriginal and Torres Strait Islander women than for non-Indigenous women when standardised to the general Australian population (47.5% versus 41.5%). However this finding was driven by differences in the prevalence of low-risk (non-oncogenic) HPV genotypes (28.7% versus 24.8%), and confidence intervals overlapped in both cases.[7]

National data on HPV vaccine coverage in Aboriginal and Torres Strait Islander girls first became available in 2021.[8,9] Nationally, the proportion of females who initiated the HPV vaccine course by age 15 was 86.7% among Aboriginal and Torres Strait Islander females and 85.6% among non-Indigenous females, for the cohort turning 15 in 2019. Initiation by age 15 exceeded 80% for Aboriginal and Torres Strait Islander girls in every state and territory except South Australia (72.3%), and exceeded 90% in New South Wales, the Northern Territory, and Victoria. Coverage with a complete vaccine course by age 15 was lower among Aboriginal and Torres Strait Islander females (71.6%) than among non-Indigenous females (80.0%) for the cohort turning 15 in 2019.^[9] Among the Aboriginal and Torres Strait Islander girls who started the vaccine course, the proportion who eventually completed it by age 15 was around 80% or less in South Australia, Western Australia and Tasmania, and 90% or higher in the remaining states and territories.[8] These data suggest that any barriers to commencement and completion of HPV vaccination courses may vary for Indigenous people living in different parts of Australia. Australia formally transitioned to adopt a 2-dose HPV vaccine schedule in 2018, and the cohort turning 15 in 2019 includes a mix of those on a 2-dose schedule and those on a 3-dose schedule, so it is too early to tell the extent to which a reduced dose schedule might improve coverage with a complete course. For both schedules, the final dose is due 6 months after the first, and so would still be affected by factors such as higher absenteeism in the second half of the school year. For those who received only two doses under the previous 3-dose schedule, the dose offered in the second half of the school year was the one most commonly missed.[10] Note that unvaccinated females in Australia also have some indirect protection due to herd effects from vaccinated people, including females and males.

A national ecological study reported that the reduction in hospital admissions involving a diagnosis of genital warts in the first 4 years after the inception of the National HPV Vaccination Program was similar in young Aboriginal or Torres Strait Islander women and non-Aboriginal and Torres Strait Islander women (86.7% versus 76.1%; 95% confidence intervals overlapped).[11] A study of 39 sentinel sexual health clinics also reported that the reduction in genital warts in the 7-year period after the introduction of HPV vaccination was similar for Aboriginal and Torres Strait Islander people and non-Indigenous people, both for females (directly offered vaccination) and for heterosexual males (who at that point were only protected via herd effects from female vaccination).[12] A repeat cross-sectional study among young Aboriginal and Torres Strait Islander females aged 18-26 years attending for cervical screening in four clinics located in Central Australia, North Queensland and rural New South Wales reported that the prevalence of vaccine-preventable HPV types fell by 94%, from 24% in the pre-vaccine survey to 1.4% in the repeat survey in 2014-2015. [13, 14, 15]

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2021 evidence review: self-collection

A general review of the literature was undertaken to identify studies assessing the acceptability to Aboriginal and Torres Strait Islander women of screening on a self-collected sample (including uptake of this option) and adherence to follow-up among Aboriginal and Torres Strait Islander women in whom HPV is detected in a self-collected sample. Three studies assessing acceptability (including uptake) were identified[16,17,18] two of which were in women who were under- or never-screened and who had used or been offered self-collection as part of pilot studies of clinic-based self-collection.[16,17] One other study was conducted among Aboriginal and Torres Strait Islander women with a mix of screening histories (30% up to date; 40% previous screeners who were overdue; 30% never screened) who were asked for opinions on self-collection (and cervical screening more broadly) but had not used it.[18] In the two studies where previously under-screened women were offered the option of self-collection, approximately 80% or more agreed to screening, mostly using a self-collected sample.[16,17] More than 90% of those who used self-collection reported that it was simple, afforded them privacy, that they were satisfied with the collection method and process, and that they would use it again.[16] The study among Aboriginal and Torres Strait Islander women with a mix of screening histories and who had not used self-collection reported that relatively few would elect to use self-collection themselves, but those who were interested in self-collection tended to be those who had never screened or were significantly overdue for screening.[18] Regardless of their personal preference, however, most women in this study were supportive of self-collection being offered as an alternative option, and could see advantages such as increased autonomy, control over the process and privacy. They also expressed that the option to use self-collection could help engage people in screening who would not otherwise. Those women who indicated they would not prefer to use self-collection expressed concerns about administering the test correctly or had difficulties doing so, or preferred a doctor to collect the sample.[16,18]

Only one study provided information about adherence to recommended follow-up, and the number of Aboriginal and Torres Strait Islander women requiring follow-up was small (39 women).[16] The proportion of women who attended for recommended follow-up was 56% (22/39) overall. Almost all of the women who had HPV (16/18) detected attended for colposcopy (8/9), but attendance for follow-up was lower among the women with HPV (not 16/18) detected (14/30). The second pilot study did not report adherence to follow-up specifically in Aboriginal women.[17] Both pilot studies were undertaken with under-screened women and so may have limited applicability to a broader population. They also included additional support for women to complete the follow-up pathway, such as individual support from a primary healthcare nurse and offering accompaniment, transport or financial support to attend recommended follow-up.

Synthesis

Current evidence does not support the use of a more intensive screening strategy for Aboriginal and Torres Strait Islander women. To date, the NCSP has not been successful in reducing the incidence and mortality of cervical cancer among Aboriginal and Torres Strait Islander women. More effective strategies are needed to increase their participation in the NCSP. Strategies for improving equity, accessibility, effectiveness and cultural sensitivity of cervical screening services for Aboriginal and Torres Strait Islander women should be explored. Data collection systems should be improved to ensure that accurate data for Aboriginal and Torres Strait Islander women are available for inclusion in the NCSR.

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In the absence of evidence to support specifically tailored screening protocols for Aboriginal and Torres Strait Islander women, participation in the NCSP is expected to reduce rates of cervical cancer among Aboriginal and Torres Strait Islander peoples.

Invitations to participate in screening may cause unnecessary anxiety for some Aboriginal and Torres Strait Islander women if they have not received adequate education and explanation about cervical cancer and its link with HPV infection. Culturally sensitive education should be implemented to minimise this potential harm.

The option for all people eligible for cervical screening, including Aboriginal and Torres Strait Islander people, to choose self-collection if they prefer is expected to make cervical screening more culturally appropriate, by providing women with more choice and agency in screening, and more autonomy and control over their health and their body.

See Chapter 5. Benefits, harms and cost-effectiveness of cervical screening in the renewed National Cervical Screening Program (NCSP).

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Clinical practice

Healthcare professionals who provide screening services for Aboriginal and Torres Strait Islander women need to be able to allocate enough time to provide education about screening, the option of self-collection, and encouragement to participate in the program. Improved resources for cervical screening for Aboriginal and Torres Strait Islander women should be made available.

For all women who present for cervical screening the healthcare professional should ascertain the woman’s Aboriginal and Torres Strait Islander status and record this on the pathology request form. This information is collected by the National Cancer Screening Register.

Resourcing

There may be too few nurses or Aboriginal Health Workers adequately trained as cervical screening test providers. Training more personnel will have cost implications. Self-collection may enable more healthcare professionals to provide cervical screening (for example males or those known personally to the woman), as cultural barriers and embarrassment are reduced when the woman collects her own sample. There is evidence from Queensland that the introduction of LBC in place of conventional cytology for cervical screening in a remote high-risk population (mainly Aboriginal and Torres Strait Islander people) led to a reduction in the rate of unsatisfactory smears.[23] In the Renewed program it is anticipated that this benefit will be continued as unsatisfactory rates are extremely low for HPV tests. Well-designed and conducted research is needed to explore opportunities to implement point-of-care testing in remote communities, enabling counselling and, if needed, further assessment and treatment on the same day.

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Barriers to implementation

Some Aboriginal and Torres Strait Islander women are unable to access a culturally safe healthcare professional and they may not receive an invitation to participate in the NCSP if their name or mailing address has changed, if mail is not delivered to their residence (for example, those that live in remote areas), or if mail is not delivered to a single consistent residence.

Aboriginal and Torres Strait Islander women may refuse the invitation for cultural reasons or a lack of understanding about cervical cancer and its prevention. Education about HPV testing and prevention of cervical cancer is very important, and should be delivered in culturally sensitive and appropriate ways, by people in whom these women have confidence.

Aboriginal and Torres Strait Islander women, especially those in rural and remote areas, often use the services of nurses and Aboriginal Health Workers who are trained cervical screening test providers. The aim is to provide the most appropriate service for individual women.

Aboriginal Health Workers and women may face multiple barriers to providing cervical screening including other health and social issues that may be a priority during an appointment. Most importantly, it can take time for workers to build trust and educate women about the need for screening.[24]

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Unresolved issues

Indigenous status is not always collected on pathology request forms and was not always routinely collected by the state and territory Cervical Screening Registers. This lack of data collection prevents the accurate assessment of cervical screening issues in Aboriginal and Torres Strait Islander women. Whilst the NCSR does collect data regarding Indigenous status, these data are incomplete and it remains the role of the clinician or healthcare provider to make note of Aboriginal and Torres Strait Islander status on relevant clinical records, including pathology request forms.

Future research priorities

Strategies to improve recruitment of Aboriginal and Torres Strait Islander women should be developed, implemented and evaluated. Consideration could be given to the development and evaluation of culturally appropriate information to support the invitation to screen. More research is required to determine why cervical screening participation in some specific communities in the Northern Territory and Queensland is higher than in others, and to translate the approaches of the more highly screened communities to the wider Aboriginal and Torres Strait Islander population. Aboriginal and Torres Strait Islander researchers need to be involved in the development of research strategies to provide culturally appropriate evidence base to translate into practice.