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RESEARCH ARTICLE (Open Access)

What young women (aged 24–29 years) in Australia think about self-collection for cervical screening: a brief report

Claire M. Zammit https://orcid.org/0000-0002-3199-6715 A B * , Alexandra Brooks C , Julia M. L. Brotherton https://orcid.org/0000-0002-2304-3105 A and Claire E. Nightingale https://orcid.org/0000-0002-4103-6240 A
+ Author Affiliations
- Author Affiliations

A University of Melbourne, Melbourne School of Population and Global Health, Centre for Health Policy, Melbourne, Vic., Australia.

B Australian National University, National Centre for Aboriginal and Torres Strait Islander Wellbeing Research, Canberra, ACT, Australia.

C Australian Government Department of Health and Aged Care, Canberra, ACT, Australia.

* Correspondence to: Claire.zammit@unimelb.edu.au

Handling Editor: Jacqueline Coombe

Sexual Health 21, SH24033 https://doi.org/10.1071/SH24033
Submitted: 19 February 2024  Accepted: 7 May 2024  Published: 4 June 2024

© 2024 The Author(s) (or their employer(s)). Published by CSIRO Publishing. This is an open access article distributed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (CC BY-NC-ND)

Abstract

Background

In mid-2022 Australia’s National Cervical Screening Program made self-collection of a vaginal sample an option for screening for young women or people with a cervix aged 25 to 29 years for the first time. This study explored what young women thought about, and wanted to know about, self-collection, and what their future screening preferences are.

Methods

Young women (n = 21), aged 24–29 years, were recruited through social media. Semi-structured interviews explored screening history, screening preferences and thoughts about self-collection. Data were analysed using an a priori coding framework informed by the Theoretical Framework of Acceptability.

Results

Young women valued the addition of self-collection to the national cervical screening program, believing it to be less invasive and more convenient. However, they also valued the choice to opt for a clinician-collected specimen if preferred.

Conclusions

Self-collection is a valuable addition to the National Cervical Screening Program. This study suggests that continued efforts are needed to raise awareness of its availability, and improve understanding about its accuracy, the ease of collection, that you still need to engage with a primary healthcare service to access it and that you can still opt for a clinician-collected test.

Keywords: cancer, cervix, evidence-based medicine, health services, HPV, papillomavirus, primary care, public health, sampling, screening, self-collection, women.

Introduction

Australia’s National Cervical Screening Program (NCSP) offers human papillomavirus (HPV)-based primary screening to all women and people with a cervix aged between 25 and 74 years every 5 years.1 Since 2018, when HPV screening replaced Papanicolaou smears, the NCSP has offered an option for some people to collect their own vaginal sample (self-collection), rather than undergoing a speculum examination to collect a cervical sample.2 Self-collection was initially restricted to under- and never-screened people, who were aged ≥30 years, and declined a clinician-collected specimen.2 Under these conditions, self-collection was challenging to implement.3 In mid-2022, updated evidence confirming the equivalence of self-collection to clinician collection cervical samples for detecting high-grade cervical dysplasia4 informed a revision of guidelines to allow all participants due for screening a choice between self-collection and clinician-collected screening.5 This meant that women and people with a cervix,A aged between 25 and 29 years (hereafter referred to as young women) could, for the first time, opt to participate in the NCSP via self-collection.

Most people in this age group will have had access to Australia’s National HPV Vaccination program. Screening is still recommended among HPV-vaccinated women, as vaccination does not prevent all HPV types that can cause cervical cancer.6 In 2023, Australia switched its HPV vaccine schedule to a single dose of nonavalent HPV vaccine, which is now available free in an ongoing extended catch-up program up to the age of <26 years. All women in Australia are invited to undergo their first cervical screening test (CST) when they turn 25 years, through receiving a letter from the National Cancer Screening Register, which prompts them to see their primary care provider. There are well described barriers to screening participation that may impact initial and ongoing participation in the NCSP, including a lack of awareness and time, negative experiences during previous screening, experiences of physical pain, emotional distress or previous sexual trauma.7,8

Although there is a large body of evidence demonstrating that self-collection is highly acceptable, and leads to greater participation,4,9,10 there has been limited research into the screening preferences of young women in Australia. The most recent data indicates that only 53% of 25–29 year olds are up-to-date with screening, suggesting that timely initiation of screening at 25 years is not occurring.11 As many of the well-described barriers emerge because of negative screening experiences, understanding the role of self-collection in initial screening engagement and in regular participation is important. We therefore aimed to explore the perceptions of young women about the availability of self-collection, at the time when this option was first introduced.

Methods and approach

We recruited young women aged 24–29 years currently living in Australia (n = 21, from 73 expressions of interest; 53 of whom did not respond to a follow-up invitation) through a paid social media advertisement to participate in a semi-structured interview, either on Zoom or in-person. The interview guide (Supplementary material file S1) explored awareness and acceptability of cervical screening and self-collection, previous screening experiences, preferences for screening, and suggestions for health promotion. Interviews went for 11–29 min (average 20 min) and were conducted in July/August 2022, as self-collection was first made accessible to young people in Australia. All interviews were audio recorded and transcribed verbatim using an AI transcription service, Otter AI. Transcripts were cleaned and cross-checked for accuracy and data familiarisation before being de-identified and uploaded to NVIVO 12. Directed content analysis utilising an a priori coding framework informed by the Theoretical Framework of Acceptability12 was applied.13 The Theoretical Framework of Acceptability was operationalised to explore young women’s prospective acceptability or experience of self-collection (Table S2). An inductive approach was employed to further explore subthemes within the high-level domains of the Theoretical Framework of Acceptability. Primary coding was completed by author AB, who iteratively consulted CZ and CN to develop the framework until no new themes were identified.

Ethics approval

Ethics approval was obtained from the University of Melbourne Human Research Ethics Committee (Ethics ID: 24337). All participants provided prior informed verbal or written consent to participate in this study, as approved by the ethics committee cited.

Results

Demographic information about participants

All participants identified as women (median age 26 years). Two identified as from a culturally and linguistically diverse community, and one as an Aboriginal woman. A total of 71% of participants reported living in metropolitan areas (n = 15), whereas 14% reported living in regional areas (n = 6). Over 80% of participants (n = 17) self-reported receiving HPV vaccination, three (14%) were unvaccinated and one could not recall. A total of 62% (n = 13) of participants were up to date with screening, 29% were overdue (n = 4) or could not recall (n = 2) and 10% were not yet eligible (<25 years, n = 2). See Table S1 for additional demographic information.

Key themes

Knowledge and knowledge sources related to the NCSP

All participants had heard of cervical screening, although there was more familiarity with the previous test, ‘Pap smear’. Not all participants were aware of how frequently they should screen, with many believing it to be more frequent than every 5 years. Most participants received their cervical screening information from their general practitioner (GP) with other sources, including online materials, NCSP reminder letters, and information from friends and family.

Previous screening experiences

Most participants (n = 15) had participated in cervical screening with a speculum. One felt that ‘he [GP or provider] didn’t really explain what was happening … so it was a pretty poor experience’ with a lack of explanation about what would happen afterwards, leading them to feel ‘nervous’ and ‘weird’.

Some participants who had completed cervical screening with a speculum described the physical procedure as ‘very uncomfortable’ and ‘cold and quite painful’, with some participants being ‘reluctant to do it again’.

However, others described higher levels of comfort with the procedure, mainly due to the support from their GP. They felt everything was explained thoroughly before the procedure, which improved their overall experience.

Of the participants in the screen-eligible age group (n = 4) who had not participated in screening, reasons for non-participation included not being sexually active yet, being ‘freaked out [by] the whole idea of the Pap smear test’ or to ‘come [back] next year, because you’ll have a lot of tests done anyway being pregnant’.

Awareness and acceptability of self-collection

Most participants (n = 13) had heard of self-collection before the interview through social media or online news sources. One participant had already completed a CST via self-collection. Participants expressed high acceptability of self-collection as a choice for cervical screening regarding it as ‘a lifesaver’.

More than half (n = 12) the participants said they would opt for self-collection next time they were due for screening. Six indicated they would opt for a clinician-collected CST, and two would ask the clinician to assist in the collection of a vaginal specimen without the use of a speculum. The remaining participant was unsure. Participants opting for clinician-collected/-assisted CSTs indicated that they ‘have to be at the doctor’s place anyways’, they prefer the doctor to ‘double check there’s not anything funny going on down there’ or that they were worried about collecting the sample properly.

Although participants agreed that self-collection may increase participation, there were still concerns raised about the accuracy of the test. Participants also wanted clarity on whether the test could be done at home, with some expressing that if you could ‘self-collect at home, then it would be even better.’

Suggested promotional strategies

All participants thought that self-collection needed to be better promoted to young people, with most indicating that social media channels were effective for this age group. Most participants (n = 16) preferred the term ‘self-collection’ over ‘self-sampling’, and all participants were supportive of the use of inclusive language (i.e. women and people with a cervix). Most participants (n = 18) indicated that receiving a text from their GP telling them that self-collection is available would encourage them to screen.

Discussion

We found that young women perceived self-collection to be a valuable addition to the NCSP, although they still valued the choice to opt for a clinician-collected CST. In this group of women, many reported negative previous experiences of cervical screening, a factor known to be a barrier to future screening participation.7,8 The introduction of self-collection is likely to play a role in mitigating this as an ongoing barrier for people with this experience.8

Although most participants had heard of self-collection, promotional efforts should inform young people that the test is as accurate as a clinician-collected CST, that it is easy and simple to do yourself, that you still need to attend the doctor to access the test, and there is still an option to have a clinician-collected CST. These findings are consistent with other studies that have explored information needs related to self-collection for young women7 in Australia and other priority populations, including women of culturally and linguistically diverse communities, Aboriginal and Torres Strait Islander women and Indigenous women globally, women living rurally, aged >60 years or people identifying as LGBTQ, particularly at the intra- and inter-personal level.7,9,1419 This study highlights the critical role of primary care providers (but not limited to GPs)17,20,21 in providing accurate information to participants, and in facilitating and supporting an informed choice between screening options.22 Mobile health technologies or social media could be leveraged by primary care to facilitate this communication through providing reminders to screen, automated or manual phone-calls, education or awareness, or peer-support.23,24

Australian data already indicate that the proportion of CSTs that are self-collected is increasing each month, across age groups, jurisdictions, rurality and socio-economic status.25 There are early indications that self-collection is working to engage under- and never-screened people into the program.25 However, international trials of self-collection have reported that although it can increase participation, variation in follow-up rates for women with a positive test result is evident, ranging from 41% to 100% in trials included in a recent meta-analysis,26 again, highlighting the role of a supportive practitioner and accessible health system. It should be noted that many of these trials offer self-collection through mail-out models (unlike in Australia), predominantly targeted only at under-screened groups.

This study was limited by its small sample, which did not include any participants who identified as gender diverse. The qualitative nature of the study may also have enabled a social desirability bias. Despite these limitations, this study does provide useful insights into the cervical screening preferences of young adults.

Conclusion

Young women are now able to access state of the art prevention strategies against cervical cancer in line with Australia’s National Strategy for the Elimination of Cervical Cancer.22 Further efforts are required to inform young people about the relative simplicity and effectiveness of self-collection for cervical screening, and about single-dose HPV vaccination, and how to access them.

Supplementary material

Supplementary material is available online.

Data availability

Qualitative data that support this study cannot be publicly shared due to ethical or privacy reasons, but may be shared upon reasonable request to the corresponding author if appropriate.

Conflicts of interest

Author JMLB was previously employed by ACPCC. ACPCC has previously received donations of equipment and HPV test kits from Roche, Seegene, Abbott, BD, Cepheid and Copan for research and validation studies. Author JMLB is also an Associate Editor of Sexual Health. To mitigate this potential conflict of interest they had no editor-level access to this manuscript during peer review. Author AB is now employed by the Australian Government Department of Health and Aged Care, but was not at the time of the research.

Declaration of funding

CMZ is a PhD candidate and is financially supported by an Australian Government Training Program Scholarship, a University of Melbourne, Melbourne Research Scholarship, and supported by the NHMRC-funded Centre of Research Excellence in Targeted Approaches to Improve Cancer Services for Aboriginal and Torres Strait Islander Australians (TACTICS; #1153027) through a PhD top-up scholarship. CEN is supported by a Mid-Career Research Fellowship (MCRF21039) from the Victorian Government acting through the Victorian Cancer Agency, which provided funding support for this project.

Acknowledgements

We thank all the young women who volunteered their time and shared their stories with us for this research. We also acknowledge the support of Ana Machado Colling and Nicola Creagh of University of Melbourne, and Kerryann Wyatt of Cancer Council Victoria for their support in participant recruitment.

References

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Footnotes

1 The authors note that they generally use the term ‘women’ to refer to people eligible for cervical screening, and respectfully acknowledge that some people with a cervix do not identify as women and are equally impacted by the risk of cervical cancer.