“Why didn’t I get that choice?”: A qualitative exploration of how cervical screening choices are presented by healthcare providers and understood by screen-eligible people in Australia, two years after self-collection became an option for all

“Why didn’t I get that choice?”: A qualitative exploration of how cervical screening choices are presented by healthcare providers and understood by screen-eligible people in Australia, two years after self-collection became an option for all | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article “Why didn’t I get that choice?”: A qualitative exploration of how cervical screening choices are presented by healthcare providers and understood by screen-eligible people in Australia, two years after self-collection became an option for all Ana Machado Colling, Tessa Saunders, Nicola Creagh, Maleeha Ashfaq, and 2 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-6515903/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 18 Aug, 2025 Read the published version in Health Expectations → Version 1 posted You are reading this latest preprint version Abstract Background Australia’s Human papillomavirus (HPV) based National Cervical Screening Program guidelines state that anyone eligible for screening should be offered a choice of using self-collection or clinician-collection for initial screening. Aim: To explore the awareness and experiences of Victorian women and people with a cervix who had screened since this choice became available in July 2022. Methods Semi-structured interviews were conducted with 43 people. who self-reported a cervical screen within 12 months of our study. Interview data were thematically analysed and mapped to The Ottawa Decision Support Framework. Self-reported screening history was confirmed with de-identified data from the National Cancer Screening Register (NCSR) Victorian Raw Data Extract (November 2024). Results Fewer than half (19, 44%) of those interviewed were given a choice at their most recent screen, with variation in how options were presented by healthcare providers. Participants felt they lacked awareness and knowledge to feel confident in their options. Most participants viewed having a choice as important and, even if they did not prefer self-collection for themselves, noted benefits for others. Some felt disappointed or angry about not having a choice, while others were happy to defer to their doctor. Relationships with, and the views of, healthcare providers strongly influenced decision-making. Participants reflected on potential advantages of self-collection if it could reduce the cost of appointments and be accessed in more flexible ways. Among the 38 participants who consented to screening history verification, the self-reported data showed reasonable accuracy (67%) against the NCSR. Conclusion Despite a clear policy directive for practitioners to offer a choice to all eligible individuals, many recent screeners were not offered the choice or lacked knowledge, confidence, and decision supports needed to make an informed choice. The choice of screening method appears strongly influenced by if, and how, options are presented by healthcare providers. A range of strategies are needed to ensure screeners feel empowered, supported and informed to make and carry out a real choice. Patient or Public Contribution Members of the public were involved in interviews. Findings were summarised and disseminated via a short report. A consumer advisory panel provided feedback on the content, readability and length of all patient facing resources. Health Policy Preventive Medicine Sexual & Reproductive Medicine Women's studies Cervical screening self-collection qualitative information choice decision implementation Figures Figure 1 Figure 2 Figure 3 Introduction Australia’s National Cervical Screening Program (NCSP) recommends five-yearly Human Papillomavirus (HPV) based screening for women and people with a cervix (hereafter referred to as women) aged 25–74. Under the NCSP guidelines, anyone eligible for screening should be offered a choice between self-collection (whereby a person can use a small swab inserted into the low-mid vagina to collect the specimen) or clinician-collection for screening ( 1 ). The guidelines state that clear information should be provided to support informed decision-making about these options. There are some key considerations in making the choice between clinician-collection and self-collection and these include (a) client preference between the options, noting that a clinician collected test requires the use of a speculum (b) if using self-collection, there is the potential to be recalled for an additional visit to have a cervical sample collected if HPV non-16/18 is detected on the initial sample (Fig. 1), which occurs in approximately 5.6% of all screening cases but the range of positivity changes considerably by age, ranging from 17.3% in individuals aged 25–29 to 2.2% in those aged 70–74 ( 2 ) (if a cervical sample is initially collected, this is automatically reflexed to cytology in the laboratory) (c) the slightly higher risk of an unsatisfactory specimen with self-collection, which is 1–2% verses < 0.2% for clinician-collection ( 3 ). An individual can also choose to have an assisted self-collection (from the low-mid vagina) by a health professional if they prefer ( 1 ). Australia’s current model of care requires that self-collection is ordered and overseen by a healthcare provider, with general practitioners (GPs), nurse practitioners (NPs) and other specialist providers authorised to sign the pathology request for tests reimbursable under the current Medicare Benefits Schedule (MBS) regulations ( 1 ). In 2022, self-collection became an option for everyone eligible for primary screening, and for HPV detection in follow-up ( 4 ). For four years prior, its use had been restricted to under-screened people. Because self-collection must be accessed through a healthcare provider in Australia ( 1 ), this choice is dependent on discussion between the individual and the healthcare provider. The National Cervical Screening Program guidelines emphasise taking a ‘person-centred’ approach to presenting this choice, where person-centred is understood as “seeking out and understanding what is important for each screen-eligible person, fostering trust, establishing mutual respect, and enabling shared decision-making” ( 1 ). Shared decision making is key to enabling informed choices about screening options and is defined within the literature as a “patient centred approach to care in situations where there is more than one medically reasonable option….and [can] prove beneficial in situations where more than one treatment or screening decision is valid.” ( 5 ). Through the transition to HPV screening and initial introduction of restricted access self-collection, awareness and adoption of self-collection remained limited. Many healthcare providers held concerns about the accuracy of self-collection, perceptions of missed opportunities to visualise the cervix, and confusion over screening guidelines and how to access laboratory services to process the specimen ( 6 – 10 ). Further, while most studies find self-collection to be highly acceptable and preferable among screen-eligible people ( 11 , 12 ), concerns about the accuracy and how to perform self-collection was commonly reported ( 11 , 13 ). While the proportion of self-collected primary screens has been steadily increasing since 2022, significant variation across states and territories has been observed ( 14 ). As of June 2024, approximately 44% of cervical screens in Victoria were self-collected, slightly higher than the national average of 37% ( 15 ). In contrast, New Zealand, which also follows a practitioner-centred delivery model, but introduced universal self-collection from the outset of the change to HPV in 2023 has witnessed a higher uptake, exceeding 80% in the first year of its availability ( 16 ). The differences in the use of self-collection in Australia may reflect a variation in its delivery by healthcare providers, with a recent study indicating that not all providers were offering the choice between self-collection and clinician-collection ( 17 ). We aimed to explore how cervical screening choices were presented to, and understood by, recent screeners in Victoria, Australia, two years after self-collection became available as an option for all. Methods We employed a qualitative research design utilising semi-structured interviews to explore how cervical screening choices were experienced by recently screened people in Australia. The Ottawa Decision Support Framework (ODSF) ( 20 ) informed the methodological approach. The ODSF identifies five decisional needs that, if unmet, can impact the quality of a decision: decisional conflict (uncertainty), knowledge of options, expectations and values, beliefs about others’ opinions, and access to support and resources to make and implement decisions. Recruitment We purposively recruited women aged 25 to 74 years in Victoria, Australia who spoke English and self-reported a cervical screen within the 12 months prior to the interview. This timeframe aligned with the July 2022 policy change of universal access to the choice of self-collection and supported recall of information. Tailored recruitment materials with a QR code linking to an expression of interest (EOI) form were distributed to potential participants through community-based organisations, including libraries and local council groups. After receiving an EOI, we confirmed participant’s interest and availability over email. During the recruitment process we monitored participant demographics and test collection method using EOI data and undertook targeted recruitment to ensure a broader range of ages, test collection methods and geographical representation. Data were managed using REDCap electronic data capture tools hosted at The University of Melbourne ( 21 , 22 ). Validating Screening History We obtained additional optional written consent from participants to confirm their self-reported primary screening test collection method (self-collected or clinician-collected) and date of last screen from the National Cancer Screening Register (NCSR). The NCSR is Australia’s digital platform developed to support the NCSP and provides infrastructure for the collection storage, analysis and reporting of screening program data ( 23 ). Data from the NCSR Victorian Raw Data Extract (November 2024) was provided by the Australian Centre for the Prevention of Cervical Cancer (ACPCC) on behalf of the Victorian Cancer Screening Framework (VCSF) ( 24 ). The VCSF is a funding and governance model that guides delivery and investment of cancer screening initiatives in Victoria, Australia. Despite individual level consent, State level privacy requirements limited us to only being able to provide Medicare numbers to ACPCC for matching and not other details (such as name or address), reducing our ability to locate and confirm all participants’ screening histories (categories defined in Table 1 ). We did not obtain any screening results. Table 1 Screening History Categories Screening History Category Definition On-time On-time participants are defined as those who have screened within one year of the due date. This includes early screeners, who rescreened prior to the due date, and all participants aged under 26. Overdue Overdue participants are those who have screened after one year from the due date. "Never-screened" participants indicate that the most recent screen is the first-ever screen done by the participant. In follow-up In follow-up participants are those with previous abnormalities or HPV-positive tests and have not yet returned to routine screening intervals. Using a secure SharePoint drive, the research team were provided a de-identified summary of each participant's recent screening date, test collection method, and screening history, protecting privacy by using the study ID. Unmatched entries were flagged as “unable to match data”. Participants who requested to opt out of their data being stored on the NCSR or from the NCSP were excluded from the provided dataset. Data Collection Interviews were conducted online via Zoom or telephone based on participant’s preference, by public health researchers (A.M.C, T.S, M.A, N.C), all of whom are cis-gendered women experienced in qualitative research and cancer prevention. Consent was obtained via RedCap or verbally at the time of interview. Interviews were recorded, transcribed verbatim using Otter.ai, and followed a guide informed by the ODSF. This guide explored five key themes, including awareness, perceptions and experiences of screening, choice presentation, influencing factors, and support needs. During the interview researchers verbally provided participants with information on the screening options available under the national guidelines. The interview guide was piloted with researchers and non-researchers. Participants could review transcripts. All received a $ 50 gift voucher as reimbursement. Data Analysis Prior to analysis, transcripts were cleaned, checked for accuracy, and de-identified. Transcripts were inductively thematically coded by authors (A.M.C, T.S, M.A) using NVivo 14 (QSR International Pty Ltd), to identify key themes, followed by deductive mapping of themes to the ODSF decisional needs, to understand participant’s experiences and perspectives. Once themes were established, a content analysis ( 25 ) was performed to quantify the instances where participants were offered a choice of screening method versus those who were not. Regular meetings with the whole research team, including senior researchers (C.N, J.B), were held to discuss alignment with the ODSF and saturation of themes. Ethical Considerations Ethical approval was received by The University of Melbourne Human Research Ethics Committee (HREC number: 2025-27551-65265-7). Prior to seeking ethics approval, we gathered feedback on the content and design of all patient-facing materials from a Consumer Advisory Panel which provides advice and guidance on our cervical screening work and includes women with disability, from culturally and linguistically diverse backgrounds, LGBTQI + communities and with lived experience of cancer. Results A total of 89 EOIs were received, of which nine were suspected to be AI generated and five were ineligible (i.e., did not have a cervical screen within the previous 12 months or lived outside of Victoria). Of the 75 eligible EOI respondents, four were later excluded due to an over representation of the 25–34-year age group, and 28 did not respond to two rounds of follow up emails. A total of 43 women participated in an interview between February and May 2024. Interviews ranged in length from 20 to 53 minutes (mean: 35 minutes). Women were aged between 26 and 70 years (mean: 42 years). The characteristics of participants are described in Table 2 . Table 2 Demographic characteristics of 43 interviewed participants Category Variable n (%) Age, Years 25–34 15 ( 35 ) 35–44 10 ( 23 ) 45–54 11 ( 26 ) 55+ 7 ( 16 ) Country of Birth Australia 31 (72) Overseas – English speaking background 3 ( 7 ) Overseas - non-English speaking background 9 ( 21 ) Sexual identity Heterosexual 40 (93) Gay or Lesbian, Bisexual or used different term 3 ( 7 ) Education Completed year 12 or TAFE or both 10 ( 23 ) Completed University degree or higher 33 (77) Geography Metro 32 (74) Rural 11 ( 26 ) Self-reported test collection method Self-Collection 11 ( 26 ) Clinician-Collection 32 (74) Of the 43 women interviewed, 38 consented to confirm their screening history against the NCSR. There was a reasonable concordance between self-reported data and that provided via NCSR for validation (67%, n = 22). Variation between self-reported and NCSR data related to discrepancies in date of last screen (9 participants, of whom 8 had screened prior to July 2022) and mode of collection (2 participants) (Fig. 2). Results are presented in five main themes mapped to the ODSF: ( 1 ) Inadequate knowledge and information about the available cervical screening options; ( 2 ) variation in how screening options are presented by healthcare providers and in participant views on not being offered a choice; ( 3 ) the value in the choice itself, as it relates to unique attributes of each option, and to the characteristics of the healthcare providers involved in cervical screening; ( 4 ) variation in participants’ confidence to self-advocate for preferred choice and the influence of power dynamics in clinical consultations and ( 5 ) inadequate information and resources to understand and enact decisions and identified support needs to guide informed choice. Theme 1: Inadequate knowledge and information about the available cervical screening options While many participants knew cervical screening options existed, most had only heard about self-collection informally, and described the information surrounding it as “vague”, “hearsay” or “something in the ether”. As such, the depth of knowledge about self-collection was low, with limited or incorrect understanding of the eligibility requirements, its accuracy and how to access self-collection. “I didn't know that there was an option for me to do it myself” ID26 Misconceptions about self-collection were held by participants or observed in their broader community, including assumptions that it still required a speculum, had to reach the cervix, or was introduced primarily as a cost saving tool. “When I've spoken to people [about self-collection] … the misconception has been that you have to use a speculum on yourself.” ID01 Many felt that cervical screening received less promotion compared to other cancers and women’s health issues. As such, there was also limited understanding about the role of HPV in cervical cancer, the purpose of screening, and some concerns about the reduced frequency of screening and the later age at which screening commences within Australia’s HPV-based screening program. “... Five years seems like a long time. ... I suppose there's evidence, but it used to be what two years. ... Five seems like quite a stretch in a way” ID87 For those with a better understanding of screening options, knowledge often came from their professional role, interest in women’s health, or personal reproductive health experiences. Theme 2: Variation in how screening options are presented by healthcare providers and in participant views on not being offered a choice When asked how choices were presented to participants at their most recent screen, fewer than half (19, 44%) recalled being offered a choice between self- and clinician-collected screening. For those who were offered a choice, the way this was presented varied (Table 3 ). Some felt that options were presented equally, and that the healthcare provider did not try to persuade them about either option. Others felt the healthcare provider either favoured clinician-collection or self-collection. Several participants were only offered self-collection after they had specifically asked about it. Many participants who were not offered a choice had a clinician-collected sample taken. However, some of these participants were unsure if they had screened prior to, or after self-collection became universally available, or the consultation was related to follow up of a previous abnormal result meaning that self-collection may not have been clinically appropriate. This was confirmed for nine participants against the NCSR. Some participants were denied self-collection when requested as the healthcare provider believed it to be inferior to clinician-collection. Others had discussed self-collection at previous consultations, or had it presented as an option for their next screen after they were provided with a clinician-collected test. Interviewed participants expressed a range of different emotions about not being provided with the choice of self-collection. This ranged from feeling ambivalent, disappointed, angry, or disempowered. “I wasn’t fazed at the time that I wasn't offered it because I just assumed that it wasn't something that clinic offered. But now that I've discovered that I am eligible, and I probably should have been offered it, now I feel a bit … why didn't I get that choice?” ID39 Table 3 Variation in how cervical screening options were presented to screening participants, with supporting quotes Theme Sub-Theme Example quotes Offered Choice Options presented equally “she [GP] didn't try and steer me one way or the other…she reassured me that it would be the exact same results” ID06 Clinician-collected presented as superior “one of the things that she said was sometimes or often with self-collection if you don't do it right, you have to come back. And the GP has to do it anyway. So I think she sort of angled it a little bit as ‘if you're happy for me to do it, I might as well just collect it for you…” ID02 Self-collection presented as superior “I almost got the impression [that self-collection] was being encouraged over the GP doing it. And I didn’t want that [self-collection]” (ID87) Provided choice after patient requested [Healthcare provider said] “of course, I can do that for you right now …she was reflecting really positively on it and had no hesitation to give me what I needed.” (ID46) Not Offered Choice Clinician-collection provided with no choice offered “It [self-collection] was not presented, there was no choice” (ID27) Potentially ineligible due to timing, gynaecologist and symptoms “I went to the gynaecologist ..not sure maybe 2021 or 2022 …I can't remember” (ID35) Denied self-collection when asked for it “I did ask if I'm eligible for self-collection, and she made it very clear that self-collection is not accurate, because people can't get their cervix. And that it's always better just to come to the clinic. So, I just went through with it.” (ID52) Discussed previously but patient booked for clinician-collection “I could have done it myself, but I was there for other things…he has discussed it with me before” (ID51) Self-collection suggested for next screen only “after we did that screening, she said, ‘next time if you want to, we do have the option now for self-collection, that might be something you'd be interested in” (ID05) Theme 3: The value in the choice itself, in the unique attributes of each option, and in the characteristics of the healthcare providers involved in cervical screening Overwhelmingly, participants valued having screening choices, either for themselves or for others. Being provided with a choice was seen to enable people to choose an option that best suited their needs and provide autonomy over their own healthcare. “So, I think there is definitely value in there being different options [for cervical screening] that are available. You can kind of pick the one that suits you or suits your needs at the time” ID21 For many, self-collection was a favourable option when access was limited to a male, unfamiliar, or personally known healthcare provider, particularly in regional and remote areas. Others reported that they would continue to choose clinician-collection if they had access to their regular healthcare provider which they trust. “Having a GP that I trust doing that [clinician-collection] was fine. If I was in a situation where I didn't have that kind of relationship with someone... I may feel different about a self-collection option.” ID02 The features of self-collection that were valued by participants included increased autonomy and control over their screening experience, convenience and ease, privacy, flexibility of healthcare providers they could see for screening, and perceived opportunities to reduce costs. A commonly reported valued feature of self-collection was reduced discomfort – both physical and psychological – due to the less invasive nature of the test. “I find Pap smears traumatic. And I find this [self-collection] option so unbelievably better. There is no comparison to me. It is so much less invasive. It is so much less stressful. ... There's no pain involved. ... To be able to do it and not feel so stressed about it is a real gift.” ID31 Some indicated that while self-collection was not their choice, they noted potential benefits for women with histories of trauma, stigma and discrimination in the healthcare system. This was confirmed by a participant from the LGBTQ + community, who described choosing to specifically travel to an inclusive healthcare provider for self-collection. “When I reflect on what were the barriers or what internally stopped me from doing [cervical screenings] is that it is difficult to access that culturally appropriate service, especially in this sort of region. And once you have that service, you trust that service and rely on them. So both my gynaecologist and GP, I feel very comfortable with them, culturally, I feel very safe. So, I do make the distance [sic]” ID46 Many participants valued having a choice of where they could perform self-collection. Benefits of collection in the clinical setting, including clinic bathrooms or privately in consultations room, was the ability to ask their healthcare providers questions and complete the test immediately. For others, benefits of performing self-collection at home was viewed to provide flexibility, a greater sense of privacy, and potentially removing travel and cost barriers. “[An option] where you can [self] collect in the privacy of your own home...makes it [cervical screening] really accessible and takes some of that cost element as well.”ID02 Many participants also expressed feeling reassured that a second appointment with the healthcare provider could be arranged if they had an abnormal result following self-collection and that this provided more impetus to engage in screening and follow-up. “It [self-collection] removes the barriers for people avoiding to get tested [sic]. It's the first step because I think once you do that, you're more likely to go ahead with a speculum exam if you need one” ID01 Features of clinician-collection that participants valued included greater confidence in the accuracy of the result, trust in the skills of the healthcare provider, having a physical examination - particularly for those with previous abnormal results, and the convenience related to the time and cost of not returning for an additional cytology sample if an abnormal result was detected (Fig. 1). “Just the fact that the first time I did test positive for HPV, so I just wanted to make sure that someone that knew what they were doing, more than me, collected a sample” ID04 Theme 4 – Variation in participants’ confidence to self-advocate for preferred choice and the influence of power dynamics in clinical consultations There were differences in participants confidence to self-advocate for their preferred screening method. Several participants who had requested self-collection, but were denied the option, felt uninformed about their rights to challenge their healthcare provider. For others, their limited information about self-collection meant they were more likely to default to the method they were most familiar with, particularly when no choice was offered by their healthcare provider. “I had heard about it [self-collection] quite a while ago …And I'd forgotten that you could do it yourself at that [ appointment] stage. And the GP didn't give me the option…it was just hop on the bed, and away she goes... Why did I not get the choice?” ID40 Many felt their confidence to self-advocate would be influenced by the power imbalances in a medical appointment, including a desire to maintain a good relationship with their healthcare provider or if the provider presented a strong argument for one option. "If the doctor thinks it [self-collection] is a bad idea then maybe it is, but also just not wanting to fight with your health practitioner. So, it's just not worth the argument” ID21 However, most participants expected to feel more confident advocating for their preferred option in the future once they were better informed. This was reflected by those participants who had a better understanding of their screening options already feeling more confident during the consultation. “I think that's what supported me was having that knowledge already. And when my doctor said to me, are you due for a cervical screening test, I just knew straightaway how I wanted to proceed.” ID72 Theme 5: Inadequate information and resources to understand and enact decisions and identified support needs to guide informed choice Very few participants received information about the accuracy of self-collection, and the likelihood of being HPV + and requiring follow up, either prior to or during their medical appointment, with most receiving only a verbal explanation. Many had also not received their reminder letter, and for those who had, many did not recall that it contained information about self-collection. “There might have been [information about self-collection]. I wouldn’t have read it. I just saw the heading that said, you know, that it was due, so I booked it.” ID87 Most wanted more information to assist with understanding options and felt that cervical screening information should be promoted by healthcare providers as well as in familiar, everyday spaces such as public libraries and sporting clubs. “Probably educating doctors, that it [self-collection] is reliable, and that it's trustworthy, and that the results are real. So that they are happy to promote it within their practices. But maybe out of the box ones, too, like libraries, where you do advertising through that sort of thing” ID31 Participants called for clear and accessible information to compare their screening options, including step-by-step visual guides, links or QR codes for more information and endorsed by credible and trusted sources. “A basic rundown of the … pros and cons and ‘how to not-to’ type things … just a bit of reassurance. it's not too complex… it is a straightforward thing to do ” ID57 Most participants felt that the provision of information about their screening options ahead of the appointment would be beneficial, as it would allow them to feel better prepared and use the appointment to clarify concerns and raise preferences. “I wish I had seen something before I went to see the doctor... because... I will read it, then I will ask questions, and then make an informed decision.” ID58 In addition to greater support and resources to make decisions, some wanted structural system-level changes to access screening options and carry-out their choice, such as better access to GPs, different ways to access self-collection, and reduced medical fees. “And I think they should also not be allowed to charge for it [cervical screening tests]. Because that's mainly what put me off is the cost. That more so than the discomfort of doing it [screening].” ID51 Discussion We undertook an in-depth exploration of the awareness, knowledge and experiences of making cervical screening choices among recently screened women in one jurisdiction in Australia. Overall, participants highly valued the availability of the choice between self- and clinician-collected screening. However, most had low levels of knowledge and lacked decision support and access to timely resources to support decision making. While many participants place a high level of trust in their healthcare providers and value discussions with them, there were variations in how screening options were presented. We identified gaps in decisional support needs based on the ODSF and developed recommendations to address these (Fig. 3). Our study revealed that while most people knew of self-collection, few had accurate knowledge about its eligibility, accuracy and how to access it. Previous studies have shown similar concerns about test accuracy and collecting the sample properly ( 11 , 13 ), although studies have also shown that screeners feel confident after trying it themselves ( 26 ). Due to knowledge gaps and power imbalances within a clinical consultation, our participants’ confidence to self-advocate for their preferred option was often low. Most participants expected to feel more confident once they were better informed, a theme that has been previously reported ( 27 ). To address these gaps, previous studies have called for greater clarity on where, and how, to access self-collection, tailored communication on its accuracy, ease, and privacy, and reiteration that the option for clinician-collection is still available ( 28 , 29 ). As identified in our study, people want to see messages about the choices available to them in everyday spaces, in language they can understand, and reiterated within clinical interactions to build their trust and confidence. National campaigns promoting choice and autonomy have launched since data collection for this study ( 30 , 31 ). Post campaign evaluations may determine if this need has been addressed. In addition to empowering screeners to self-advocate, ensuring healthcare providers are appropriately trained to present options in a balanced way is essential. Despite updated guidelines on self-collection, a range of healthcare provider-targeted resources on how to offer choice ( 32 , 33 ), and accredited online education modules ( 34 ), provider adoption of self-collection into primary care remains varied ( 17 ). Our findings reiterate the need for accessible, clear, and targeted communication and education for healthcare professionals that address ongoing concerns about missed opportunities for pelvic examinations, accuracy of self-collection, and patients’ ability to correctly self-collect, to ensure full-scale adoption. Our study found that people’s choices were impacted by the value they place on different attributes of each option. The ‘‘risk’’ of a second visit following self-collection was a disadvantage for some, worried about the cost and the time it would take, while others perceived it as reassuring. Informing people of this possibility could help inform screening decisions based on individual’s values. Decision aids have shown to improve patient knowledge, reduce decisional conflict, clarify values, and increase patient involvement in decision-making ( 35 ). Our study calls for widespread decision support tools to communicate to all stakeholders the equivalence in accuracy between screening options and key trade-offs, including explaining how and why they are equivalent (because HPV is shed from the cervix into the vagina if an infection is present). A simple one-page infographic could be used to highlight these key areas for all people considering their cervical screening options, with provision of links (via QR codes or to a website) or additional hard copy resources for those who want to know more. Recently a cervical screening decision aid was developed and tested with 360 women attending a Gynaecology Outpatient Clinic within the Australian context ( 36 ), but it did not include information on the risk of a return visit for those who test positive on a self-collected swab. A Canadian online preference-elicitation tool for cervical screening modalities, based on decision-making concepts and validated against the ODSF, found preliminary evidence supporting participants in identifying informed, values-based cervical screening preferences ( 27 ). Additionally, a recent UK study developed a comprehensive decision support strategy in preparation for the introduction of the choice of self-collection within their screening program ( 37 ). These existing resources could be adapted to the Australian context to support potential screeners in understanding their options and be active in their decision-making. We found inconsistencies in participants receiving reminder letters and missed opportunities to raise awareness of self-collection. Reminder systems to alert people they are due for screening provide an opportunity to improve knowledge of options prior to consultations. Australia’s NCSR has recently launched a participant portal, which could be more widely promoted ( 38 ). This could further facilitate participants autonomy to check their own screening history and become informed about screening options. Participants felt self-collection would be more advantageous if it could reduce appointment costs and was more accessible. Australia’s guidelines support flexibility in where self-collection can be offered, and by which healthcare provider ( 39 ), enabling nurses and Aboriginal health workers/practitioners who are highly trusted by the community ( 40 , 41 ) to discuss screening options. New funding models to allow these professionals to independently request and be reimbursed by Medicare, alongside access to the NCSR, could support information provision and outreach initiatives, a key enabler to engaging under screened populations ( 42 ). The development of integrated pathways to ensure continuity of care, where referral is needed for those testing positive for HPV, is now a policy priority. To address these decisional gaps and support needs, we recommend four key actions: Build on existing national campaigns by making tailored resources available through channels relevant to different communities to address inadequate knowledge and support informed decision-making Develop decision support tools that clearly articulate key trade-offs between screening options Monitor the roll out of updated training resources for healthcare providers, to ensure consistent presentation of screening options in line with NCSP guidelines Improve system accessibility by reducing appointment costs, supporting flexible ways to access self-collection and exploring new funding models to promote broader workforce involvement in screening, enabling people to enact the decisions they make Strengths and Limitations Interviews informed by the ODSF helped to explore key decisional needs influencing the experiences and choices of cervical screening among recently screened women. Our study found reasonable accuracy of the self-reported data via NCSR validation, despite being limited in which variables were permitted to be used for matching screening histories. Limiting participants to those one year post previous screen was intentional to reduce recall bias. The study was not promoted as a study about ‘self-collection’ but of cervical screening, which reduced the risk of bias in recruiting those offered or not offered the choice. Our study sample were highly educated people who mostly spoke English as a first language, only a small number identified as LGBTQI + and just over a quarter lived outside a metropolitan area which limits the generalisability of our findings. Conclusion Australia’s national guidelines for cervical screening emphasise providing people with an informed choice of screening option. Overwhelmingly, participants valued the inclusion of the choice between self- and clinician-collected screening, as this was seen to empower decision-making and allow people to choose the option that suited them best. However, we found that very few people were making informed choices that aligned with their values because they had low levels of knowledge, felt uninformed about options, did not have an accurate perception of their risk or outcomes of each screening modality (such as efficacy and likelihood of being HPV+) and many were not participating in decision-making because this was being controlled by the healthcare provider (either by not providing them with options, attempting to sway them toward a particular option, or denying them an option when requested). A range of strategies are needed to ensure screeners feel empowered, supported and informed to make and carry out a real choice including widespread promotion, decision support tools, appropriately training healthcare providers and system improvements. References Cancer Council Australia [Internet] [cited 2025 Mar 6]. Cervical Cancer Screening Program Guidelines. Available from: https://www.cancer.org.au/clinical-guidelines/cervical-cancer/cervical-cancer-screening Australian Institute of Health and Welfare [Internet] (2024) [cited 2025 Mar 6]. National Cervical Screening Program monitoring report 2024. Available from: https://www.aihw.gov.au/reports/cancer-screening/ncsp-monitoring-2024/report-editions Understanding the NCSP Program Management Pathway A guide for healthcare providers [Internet]. [cited 2025 Mar 6]. Available from: https://www.cancer.org.au/assets/pdf/understanding-ncsp-management-pathway Department of Health and Aged Care [Internet]. Australian Government Department of Health and Aged Care (2021) [cited 2025 Mar 14]. Self collection to increase choice within the National Cervical Screening Program. Available from: https://www.health.gov.au/news/self-collection-to-increase-choice-within-the-national-cervical-screening-program Schrager SB, Phillips G, Burnside E (2017) A Simple Approach to Shared Decision Making in Cancer Screening. Fam Pract Manag 24(3):5–10 Creagh NS, Zammit C, Brotherton JM, Saville M, McDermott T, Nightingale C et al (2021) Self-collection cervical screening in the renewed National Cervical Screening Program: a qualitative study. Med J Aust 215(8):354–358 Bavor C, Brotherton JM, Smith MA, Prang KH, McDermott T, Rankin NM et al (2023) The early impacts of primary HPV cervical screening implementation in Australia on the pathology sector: a qualitative study. BMC Health Serv Res 23(1):1073 Smith MA, Sherrah M, Sultana F, Castle PE, Arbyn M, Gertig D et al (2022) National experience in the first two years of primary human papillomavirus (HPV) cervical screening in an HPV vaccinated population in Australia: observational study. BMJ 376:e068582 Foo YM, Goswami P, Grogin J, Hargan E, Thangarajah M, Dutton T et al (2021) Incorporation of human papillomavirus self-sampling into the revised National Cervical Screening Program : a qualitative study of GP experiences and attitudes in rural New South Wales. Aust J Prim Health 27(4):284–290 Creagh NS, Saunders T, Brotherton J, Hocking J, Karahalios A, Saville M et al (2024) Practitioners support and intention to adopt universal access to self-collection in Australia’s National Cervical Screening Program. Cancer Med 13(10):e7254 Camara H, Zhang Y, Lafferty L, Vallely AJ, Guy R, Kelly-Hanku A (2021) Self-collection for HPV-based cervical screening: a qualitative evidence meta-synthesis. BMC Public Health 21(1):1503 Nishimura H, Yeh PT, Oguntade H, Kennedy CE, Narasimhan M HPV self-sampling for cervical cancer screening: a systematic review of values and preferences. BMJ Glob Health [Internet]. 2021 May 19 [cited 2025 Feb 10];6(5). Available from: https://gh.bmj.com/content/6/5/e003743 Nagendiram A, Bougher H, Banks J, Hall L, Heal C (2020) Australian women’s self-perceived barriers to participation in cervical cancer screening: A systematic review. Health Promot J Austr 31(3):343–353 Cervical Screening Test self-collection uptake report [Internet]. [cited 2025 Mar 6]. Available from: https://www.health.gov.au/sites/default/files/2024-12/update-on-cervical-screening-self-collection-uptake.pdf Australian Government Services Australia [Internet] [cited 2025 Mar 6]. Medicare Item Reports. Available from: http://medicarestatistics.humanservices.gov.au/statistics/mbs_item.jsp New Zealand Government [Internet] [cited 2025 Mar 6]. Strong uptake for cervical screening self-test. Available from: https://www.beehive.govt.nz/release/strong-uptake-cervical-screening-self-test Creagh NS, Brotherton JML, Hocking J, Karahalios A, Smith MA, Hawkes D et al Factors influencing practitioners’ decision to offer (or not) the choice of self-collection cervical screening in general practice in Victoria, Australia. Press Aust J Gen Pract Australian Institute of Health and Welfare [Internet] (2023) [cited 2025 Apr 2]. National Cervical Screening Program monitoring report 2023, Summary. Available from: https://www.aihw.gov.au/reports/cancer-screening/ncsp-monitoring-2023/summary Understanding the NCSP Program Management Pathway A guide for healthcare providers [Internet]. National Cervical Screening Program; Available from: https://www.cancer.org.au/assets/pdf/understanding-ncsp-management-pathway Stacey D, Légaré F, Boland L, Lewis KB, Loiselle MC, Hoefel L et al (2020) 20th Anniversary Ottawa Decision Support Framework: Part 3 Overview of Systematic Reviews and Updated Framework. Med Decis Mak 40(3):379–398 Harris PA, Taylor R, Minor BL, Elliott V, Fernandez M, O’Neal L et al (2019) The REDCap consortium: Building an international community of software platform partners. J Biomed Inf 95:103208 Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG (2009) Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inf 42(2):377–381 National Cancer Screening Register [Internet] [cited 2025 Apr 18]. About the National Cancer Screening Register. Available from: http://www.ncsr.gov.au/about-us.html Data Requests [Internet] ACPCC. [cited 2025 Apr 18]. Available from: https://acpcc.org.au/services/population-health/data-requests/ Krippendorff K (2019) Content Analysis: An Introduction to Its Methodology [Internet]. SAGE Publications, Inc.; [cited 2025 Apr 1]. Available from: https://methods.sagepub.com/book/mono/content-analysis-4e/toc Meiselbach K, Nightingale C, Anderson S, Ryan A, O’Reilly C, Saville M et al (2023) Do it for yourself: Australia’s first experience of universal eligibility for self-collection cervical screening increases access for Aboriginal and Torres Strait Islander women. First Nations Health Wellbeing - Lowitja J 1:100002 Wood B, Taljaard M, El-Khatib Z, McFaul S, Graham ID, Little J (2019) Development and field testing of a tool to elicit women’s preferences among cervical cancer screening modalities. J Eval Clin Pract 25(6):1169–1181 Zammit CM, Brooks A, Brotherton JML, Nightingale CE What young women (aged 24–29 years) in Australia think about self-collection for cervical screening: a brief report. Coombe J, editor. Sex Health [Internet]. 2024 Jun 4 [cited 2024 Oct 28];21(4). Available from: https://www.publish.csiro.au/SH/SH24033 Machado Colling A, Creagh NS, Gogia N, Wyatt K, Zammit C, Brotherton JML et al (2024) The acceptability of, and informational needs related to, self-collection cervical screening among women of Indian descent living in Victoria, Australia: A qualitative study. Health Expect 27(1):e13961 ACON [Internet] [cited 2025 Mar 6]. Own It - It’s your Cervical Screening Test. Available from: https://ownit.org.au/ Cancer Council Victoria [Internet] (2024) [cited 2025 Mar 6]. Cancer Council Victoria launched the In Your Hands cervical screening campaign this month. Available from: https://www.cancervic.org.au/about/our-history/history-in-the-present/cancer-council-victoria-launched-the-in-your-hands-cervical-screening-campaign-this-mont.html Australian Government Department of Health and Aged Care [Internet] Australian Government Department of Health and Aged Care; 2024 [cited 2025 Mar 6]. Resources. Available from: https://www.health.gov.au/resources Australian Centre for the Prevention of Cervical Cancer [Internet]. [cited 2025 Mar 6]. Clinical Resources. Available from: https://acpcc.org.au/practitioners/clinical-resources/ GPEX [Internet] (2023) [cited 2025 Mar 6]. Breast, Bowel and Cervical Cancer Screening. Available from: https://gpex.com.au/course/breast-bowel-and-cervical-cancer-screening-clinical-education-module/ Stacey D, Légaré F, Col NF, Bennett CL, Barry MJ, Eden KB et al (2014) Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. ;(1):CD001431 Pecoraro C, Wedisinghe L, Jangam J, Dore G, Harrison C, Chan G et al Development and pilot evaluation of a decision aid for modern cervical screening [Internet]. 2024 [cited 2025 Mar 6]. Available from: https://www.ejgo.net/articles/ 10.22514/ejgo.2024.119 Williams D, Clarke E, Lifford KJ, Haywood L, Wood F, Waller J et al (2025) Recommendations for a Communication Strategy to Support Informed Decision-Making About Self or Clinician Sampling for Cervical Screening in the UK: Qualitative Study. Health Expect Int J Public Particip Health Care Health Policy 28(2):e70191 National Cancer Screening Register [Internet] [cited 2025 Mar 6]. Participant Portal. Available from: http://www.ncsr.gov.au/information-for-participants/participant-portal.html national-strategy-for -the-elimination-of-cervical-cancer-in-australia.pdf [Internet]. [cited 2025 Mar 7]. Available from: https://www.health.gov.au/sites/default/files/2023-11/national-strategy-for-the-elimination-of-cervical-cancer-in-australia.pdf Gannon M, Dowling M (2008) Increasing the uptake of cervical screening programmes. Br J Nurs Mark Allen Publ 17(20):1280–1284 Jaenke R, Butler TL, Condon J, Garvey G, Brotherton JML, Cunningham J et al (2021) Health care provider perspectives on cervical screening for Aboriginal and Torres Strait Islander women: a qualitative study. Aust N Z J Public Health 45(2):150–157 Costa T, Bateson D, Woo YL (2024) Enhancing equity in cervical screening - initiatives to increase screening participation. Curr Opin Obstet Gynecol 36(5):345–352 Additional Declarations The authors declare potential competing interests as follows: J. M. L. B. was previously employed at the Australian Centre for the Prevention of Cervical Cancer. ACPCC has received donations of equipment and HPV test kits from Roche, Seegene, Abbott, BD, Cepheid and Copan for research and validation studies. She is also an investigator on the SHE-CAN HPV-based cervical screening trial in India, which has accepted donations of consumable and tests from Copan, Abbott and Seegene. Cite Share Download PDF Status: Published Journal Publication published 18 Aug, 2025 Read the published version in Health Expectations → Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-6515903","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":448242638,"identity":"62bacbb1-2b30-42c9-8371-4cb9107686c2","order_by":0,"name":"Ana Machado Colling","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAABOUlEQVRIie3QMUvDQBQH8BcK6WBC1ldE+xVOAqGipF/lQqAuaRACIlgwIMTF6qrfohIIjlcP0qUf4IYOnZw6BAShKMW7QhUSxI6C+RPukrv34+UOoE6dvxotVg9obE4ALLnAADpUzuQ3AozKmla8JrgtUWVsvfYzseIdr1g+uXt3Tc4YPZ25qeiPn8U5htC8yhAGvEyQmWlrOPXth5selT/24mcipDyYYgRGfoaQVwgwc7SrJQ1vJAwiCfcdERDeT9CLMXAQ9Appyy7vWnL5Tex7RVaStBeSrCqEMDOTXfgXcQkqEqsuhoNyq0wOuJkdDpPJ5iyc4nRBeJBjpBu9qOPdnpTJ/mSYimVyoW5sPC8+eNe6DuzXYHAcWk3+KIq3o8rxG6VvL9686WqgFVBNd4uaOnXq1Pln+QT/PXqKwvkbfAAAAABJRU5ErkJggg==","orcid":"https://orcid.org/0000-0002-3211-6644","institution":"Evaluation and Implementation Science Unit, Melbourne School of Population and Global Health, The University of Melbourne, Victoria, Australia","correspondingAuthor":true,"prefix":"","firstName":"Ana","middleName":"Machado","lastName":"Colling","suffix":""},{"id":448242639,"identity":"7ba8725d-588f-4b8b-8a6a-a74d8a44f4e2","order_by":1,"name":"Tessa Saunders","email":"","orcid":"https://orcid.org/0000-0003-3702-9029","institution":"Evaluation and Implementation Science Unit, Melbourne School of Population and Global Health, The University of Melbourne, Victoria, Australia","correspondingAuthor":false,"prefix":"","firstName":"Tessa","middleName":"","lastName":"Saunders","suffix":""},{"id":448242640,"identity":"50f44bb1-b012-4c06-88a9-b0701bce8c0c","order_by":2,"name":"Nicola Creagh","email":"","orcid":"https://orcid.org/0000-0003-0908-5453","institution":"Evaluation and Implementation Science Unit, Melbourne School of Population and Global Health, The University of Melbourne, Victoria, 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Australia","correspondingAuthor":false,"prefix":"","firstName":"Julia","middleName":"","lastName":"Brotherton","suffix":""},{"id":448242643,"identity":"3ccd68f0-46c0-4073-a39d-7a47feedf3cb","order_by":5,"name":"Claire Nightingale","email":"","orcid":"https://orcid.org/0000-0002-4103-6240","institution":"Evaluation and Implementation Science Unit, Melbourne School of Population and Global Health, The University of Melbourne, Victoria, Australia","correspondingAuthor":false,"prefix":"","firstName":"Claire","middleName":"","lastName":"Nightingale","suffix":""}],"badges":[],"createdAt":"2025-04-24 00:31:48","currentVersionCode":1,"declarations":{"humanSubjects":true,"vertebrateSubjects":false,"conflictsOfInterestStatement":true,"humanSubjectEthicalGuidelines":true,"humanSubjectConsent":true,"humanSubjectClinicalTrial":false,"humanSubjectCaseReport":false,"vertebrateSubjectEthicalGuidelines":false},"doi":"10.21203/rs.3.rs-6515903/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-6515903/v1","draftVersion":[],"editorialEvents":[{"content":"https://doi.org/10.1111/hex.70397","type":"published","date":"2025-08-19T00:00:00+00:00"}],"editorialNote":"","failedWorkflow":false,"files":[{"id":81955121,"identity":"c86e6b32-3c28-4953-b1e9-1077ffbbda9f","added_by":"auto","created_at":"2025-05-05 09:48:37","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":277258,"visible":true,"origin":"","legend":"\u003cp\u003eCervical Screening Results Management Pathway, adapted from Cancer Council Australia\u003csup\u003e1\u003c/sup\u003e\u0026nbsp;(19).\u003c/p\u003e","description":"","filename":"Figure1.png","url":"https://assets-eu.researchsquare.com/files/rs-6515903/v1/ea119e2a1c7e5b28db139f78.png"},{"id":81953861,"identity":"50f8efb9-bec5-48d9-ac43-b741e4703f80","added_by":"auto","created_at":"2025-05-05 09:40:37","extension":"png","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":219082,"visible":true,"origin":"","legend":"\u003cp\u003eOverview of the 38 participants who provided consent for confirming their screening history via the National Cancer Screening Register\u003c/p\u003e","description":"","filename":"Figure2.png","url":"https://assets-eu.researchsquare.com/files/rs-6515903/v1/d92b322ccb348613a6c813a1.png"},{"id":81953863,"identity":"b7c0ed5b-ccb7-432f-b8f1-7889ff4296b3","added_by":"auto","created_at":"2025-05-05 09:40:37","extension":"png","order_by":3,"title":"Figure 3","display":"","copyAsset":false,"role":"figure","size":366490,"visible":true,"origin":"","legend":"\u003cp\u003eOverview of themes of the 43 interviewed screening participants with recommendations mapped to the Ottawa Decision Support Framework.\u003c/p\u003e","description":"","filename":"Figure3.png","url":"https://assets-eu.researchsquare.com/files/rs-6515903/v1/0e1aedd2df3c4315f465429c.png"},{"id":90612872,"identity":"254eb4a4-56f1-4421-a05f-5484379e304c","added_by":"auto","created_at":"2025-09-04 17:31:20","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1147886,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-6515903/v1/8f8f15f6-f1f9-481b-91c8-b3f5b6a494c4.pdf"}],"financialInterests":"The authors declare potential competing interests as follows: J. M. L. B. was previously employed at the Australian Centre for the Prevention of Cervical Cancer. ACPCC has received donations of equipment and HPV test kits from Roche, Seegene, Abbott, BD, Cepheid and Copan for research and validation studies. She is also an investigator on the SHE-CAN HPV-based cervical screening trial in India, which has accepted donations of consumable and tests from Copan, Abbott and Seegene.","formattedTitle":"\u003cp\u003e“Why didn’t I get that choice?”: A qualitative exploration of how cervical screening choices are presented by healthcare providers and understood by screen-eligible people in Australia, two years after self-collection became an option for all\u003c/p\u003e","fulltext":[{"header":"Introduction","content":"\u003cp\u003eAustralia’s National Cervical Screening Program (NCSP) recommends five-yearly Human Papillomavirus (HPV) based screening for women and people with a cervix (hereafter referred to as women) aged 25–74. Under the NCSP guidelines, anyone eligible for screening should be offered a choice between self-collection (whereby a person can use a small swab inserted into the low-mid vagina to collect the specimen) or clinician-collection for screening (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e). The guidelines state that clear information should be provided to support informed decision-making about these options.\u003c/p\u003e \u003cp\u003eThere are some key considerations in making the choice between clinician-collection and self-collection and these include (a) client preference between the options, noting that a clinician collected test requires the use of a speculum (b) if using self-collection, there is the potential to be recalled for an additional visit to have a cervical sample collected if HPV non-16/18 is detected on the initial sample (Fig.\u0026nbsp;1), which occurs in approximately 5.6% of all screening cases but the range of positivity changes considerably by age, ranging from 17.3% in individuals aged 25–29 to 2.2% in those aged 70–74 (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e) (if a cervical sample is initially collected, this is automatically reflexed to cytology in the laboratory) (c) the slightly higher risk of an unsatisfactory specimen with self-collection, which is 1–2% verses \u0026lt; 0.2% for clinician-collection (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e). An individual can also choose to have an assisted self-collection (from the low-mid vagina) by a health professional if they prefer (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eAustralia’s current model of care requires that self-collection is ordered and overseen by a healthcare provider, with general practitioners (GPs), nurse practitioners (NPs) and other specialist providers authorised to sign the pathology request for tests reimbursable under the current Medicare Benefits Schedule (MBS) regulations (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eIn 2022, self-collection became an option for everyone eligible for primary screening, and for HPV detection in follow-up (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e). For four years prior, its use had been restricted to under-screened people. Because self-collection must be accessed through a healthcare provider in Australia (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e), this choice is dependent on discussion between the individual and the healthcare provider. The National Cervical Screening Program guidelines emphasise taking a ‘person-centred’ approach to presenting this choice, where person-centred is understood as “seeking out and understanding what is important for each screen-eligible person, fostering trust, establishing mutual respect, and enabling shared decision-making” (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e). Shared decision making is key to enabling informed choices about screening options and is defined within the literature as a “patient centred approach to care in situations where there is more than one medically reasonable option….and [can] prove beneficial in situations where more than one treatment or screening decision is valid.” (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eThrough the transition to HPV screening and initial introduction of restricted access self-collection, awareness and adoption of self-collection remained limited. Many healthcare providers held concerns about the accuracy of self-collection, perceptions of missed opportunities to visualise the cervix, and confusion over screening guidelines and how to access laboratory services to process the specimen (\u003cspan additionalcitationids=\"CR7 CR8 CR9\" citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e–\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e). Further, while most studies find self-collection to be highly acceptable and preferable among screen-eligible people (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e, \u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e), concerns about the accuracy and how to perform self-collection was commonly reported (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e, \u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eWhile the proportion of self-collected primary screens has been steadily increasing since 2022, significant variation across states and territories has been observed (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e). As of June 2024, approximately 44% of cervical screens in Victoria were self-collected, slightly higher than the national average of 37% (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e). In contrast, New Zealand, which also follows a practitioner-centred delivery model, but introduced universal self-collection from the outset of the change to HPV in 2023 has witnessed a higher uptake, exceeding 80% in the first year of its availability (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e). The differences in the use of self-collection in Australia may reflect a variation in its delivery by healthcare providers, with a recent study indicating that not all providers were offering the choice between self-collection and clinician-collection (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e). We aimed to explore how cervical screening choices were presented to, and understood by, recent screeners in Victoria, Australia, two years after self-collection became available as an option for all.\u003c/p\u003e "},{"header":"Methods","content":"\u003cp\u003eWe employed a qualitative research design utilising semi-structured interviews to explore how cervical screening choices were experienced by recently screened people in Australia. The Ottawa Decision Support Framework (ODSF) (\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e) informed the methodological approach. The ODSF identifies five decisional needs that, if unmet, can impact the quality of a decision: decisional conflict (uncertainty), knowledge of options, expectations and values, beliefs about others’ opinions, and access to support and resources to make and implement decisions.\u003c/p\u003e\n\u003ch3\u003eRecruitment\u003c/h3\u003e\n\u003cp\u003eWe purposively recruited women aged 25 to 74 years in Victoria, Australia who spoke English and self-reported a cervical screen within the 12 months prior to the interview. This timeframe aligned with the July 2022 policy change of universal access to the choice of self-collection and supported recall of information. Tailored recruitment materials with a QR code linking to an expression of interest (EOI) form were distributed to potential participants through community-based organisations, including libraries and local council groups. After receiving an EOI, we confirmed participant\u0026rsquo;s interest and availability over email. During the recruitment process we monitored participant demographics and test collection method using EOI data and undertook targeted recruitment to ensure a broader range of ages, test collection methods and geographical representation. Data were managed using REDCap electronic data capture tools hosted at The University of Melbourne (\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e, \u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e).\u003c/p\u003e \u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eValidating Screening History\u003c/h2\u003e \u003cp\u003eWe obtained additional optional written consent from participants to confirm their self-reported primary screening test collection method (self-collected or clinician-collected) and date of last screen from the National Cancer Screening Register (NCSR). The NCSR is Australia\u0026rsquo;s digital platform developed to support the NCSP and provides infrastructure for the collection storage, analysis and reporting of screening program data (\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e). Data from the NCSR Victorian Raw Data Extract (November 2024) was provided by the Australian Centre for the Prevention of Cervical Cancer (ACPCC) on behalf of the Victorian Cancer Screening Framework (VCSF) (\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e). The VCSF is a funding and governance model that guides delivery and investment of cancer screening initiatives in Victoria, Australia. Despite individual level consent, State level privacy requirements limited us to only being able to provide Medicare numbers to ACPCC for matching and not other details (such as name or address), reducing our ability to locate and confirm all participants\u0026rsquo; screening histories (categories defined in Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e). We did not obtain any screening results.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eScreening History Categories\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eScreening History Category\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eDefinition\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eOn-time\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eOn-time participants are defined as those who have screened within one year of the due date. This includes early screeners, who rescreened prior to the due date, and all participants aged under 26.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eOverdue\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eOverdue participants are those who have screened after one year from the due date. \"Never-screened\" participants indicate that the most recent screen is the first-ever screen done by the participant.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eIn follow-up\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eIn follow-up participants are those with previous abnormalities or HPV-positive tests and have not yet returned to routine screening intervals.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eUsing a secure SharePoint drive, the research team were provided a de-identified summary of each participant's recent screening date, test collection method, and screening history, protecting privacy by using the study ID. Unmatched entries were flagged as \u0026ldquo;unable to match data\u0026rdquo;. Participants who requested to opt out of their data being stored on the NCSR or from the NCSP were excluded from the provided dataset.\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eData Collection\u003c/h3\u003e\n\u003cp\u003eInterviews were conducted online via Zoom or telephone based on participant\u0026rsquo;s preference, by public health researchers (A.M.C, T.S, M.A, N.C), all of whom are cis-gendered women experienced in qualitative research and cancer prevention. Consent was obtained via RedCap or verbally at the time of interview. Interviews were recorded, transcribed verbatim using Otter.ai, and followed a guide informed by the ODSF. This guide explored five key themes, including awareness, perceptions and experiences of screening, choice presentation, influencing factors, and support needs. During the interview researchers verbally provided participants with information on the screening options available under the national guidelines. The interview guide was piloted with researchers and non-researchers. Participants could review transcripts. All received a \u003cspan\u003e$\u003c/span\u003e50 gift voucher as reimbursement.\u003c/p\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003eData Analysis\u003c/h2\u003e \u003cp\u003ePrior to analysis, transcripts were cleaned, checked for accuracy, and de-identified. Transcripts were inductively thematically coded by authors (A.M.C, T.S, M.A) using NVivo 14 (QSR International Pty Ltd), to identify key themes, followed by deductive mapping of themes to the ODSF decisional needs, to understand participant\u0026rsquo;s experiences and perspectives. Once themes were established, a content analysis (\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e) was performed to quantify the instances where participants were offered a choice of screening method versus those who were not. Regular meetings with the whole research team, including senior researchers (C.N, J.B), were held to discuss alignment with the ODSF and saturation of themes.\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eEthical Considerations\u003c/h3\u003e\n\u003cp\u003e Ethical approval was received by The University of Melbourne Human Research Ethics Committee (HREC number: 2025-27551-65265-7).\u003c/p\u003e \u003c/p\u003e \u003cp\u003e Prior to seeking ethics approval, we gathered feedback on the content and design of all patient-facing materials from a Consumer Advisory Panel which provides advice and guidance on our cervical screening work and includes women with disability, from culturally and linguistically diverse backgrounds, LGBTQI\u0026thinsp;+\u0026thinsp;communities and with lived experience of cancer.\u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003eA total of 89 EOIs were received, of which nine were suspected to be AI generated and five were ineligible (i.e., did not have a cervical screen within the previous 12 months or lived outside of Victoria). Of the 75 eligible EOI respondents, four were later excluded due to an over representation of the 25\u0026ndash;34-year age group, and 28 did not respond to two rounds of follow up emails.\u003c/p\u003e \u003cp\u003eA total of 43 women participated in an interview between February and May 2024. Interviews ranged in length from 20 to 53 minutes (mean: 35 minutes). Women were aged between 26 and 70 years (mean: 42 years). The characteristics of participants are described in Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eDemographic characteristics of 43 interviewed participants\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCategory\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eVariable\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003en (%)\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"3\" rowspan=\"4\"\u003e \u003cp\u003eAge, Years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e25\u0026ndash;34\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e15 (\u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e35\u0026ndash;44\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e10 (\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e45\u0026ndash;54\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e11 (\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e55+\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e7 (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"2\" rowspan=\"3\"\u003e \u003cp\u003eCountry of Birth\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eAustralia\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e31 (72)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eOverseas \u0026ndash; English speaking background\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e3 (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eOverseas - non-English speaking background\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e9 (\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003eSexual identity\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eHeterosexual\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e40 (93)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eGay or Lesbian, Bisexual or used different term\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e3 (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003eEducation\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eCompleted year 12 or TAFE or both\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e10 (\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eCompleted University degree or higher\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e33 (77)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003eGeography\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMetro\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e32 (74)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eRural\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e11 (\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003eSelf-reported test collection method\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eSelf-Collection\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e11 (\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eClinician-Collection\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e32 (74)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eOf the 43 women interviewed, 38 consented to confirm their screening history against the NCSR. There was a reasonable concordance between self-reported data and that provided via NCSR for validation (67%, n\u0026thinsp;=\u0026thinsp;22). Variation between self-reported and NCSR data related to discrepancies in date of last screen (9 participants, of whom 8 had screened prior to July 2022) and mode of collection (2 participants) (Fig.\u0026nbsp;2).\u003c/p\u003e \u003cp\u003eResults are presented in five main themes mapped to the ODSF: (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e) Inadequate knowledge and information about the available cervical screening options; (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e) variation in how screening options are presented by healthcare providers and in participant views on not being offered a choice; (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e) the value in the choice itself, as it relates to unique attributes of each option, and to the characteristics of the healthcare providers involved in cervical screening; (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e) variation in participants\u0026rsquo; confidence to self-advocate for preferred choice and the influence of power dynamics in clinical consultations and (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e) inadequate information and resources to understand and enact decisions and identified support needs to guide informed choice.\u003c/p\u003e \u003cp\u003eTheme 1: Inadequate knowledge and information about the available cervical screening options\u003c/p\u003e \u003cp\u003eWhile many participants knew cervical screening options existed, most had only heard about self-collection informally, and described the information surrounding it as \u0026ldquo;vague\u0026rdquo;, \u0026ldquo;hearsay\u0026rdquo; or \u0026ldquo;something in the ether\u0026rdquo;. As such, the depth of knowledge about self-collection was low, with limited or incorrect understanding of the eligibility requirements, its accuracy and how to access self-collection.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;I didn't know that there was an option for me to do it myself\u0026rdquo; ID26\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eMisconceptions about self-collection were held by participants or observed in their broader community, including assumptions that it still required a speculum, had to reach the cervix, or was introduced primarily as a cost saving tool.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;When I've spoken to people [about self-collection] \u0026hellip; the misconception has been that you have to use a speculum on yourself.\u0026rdquo; ID01\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eMany felt that cervical screening received less promotion compared to other cancers and women\u0026rsquo;s health issues. As such, there was also limited understanding about the role of HPV in cervical cancer, the purpose of screening, and some concerns about the reduced frequency of screening and the later age at which screening commences within Australia\u0026rsquo;s HPV-based screening program.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;... Five years seems like a long time. ... I suppose there's evidence, but it used to be what two years. ... Five seems like quite a stretch in a way\u0026rdquo; ID87\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eFor those with a better understanding of screening options, knowledge often came from their professional role, interest in women\u0026rsquo;s health, or personal reproductive health experiences.\u003c/p\u003e \u003cp\u003eTheme 2: Variation in how screening options are presented by healthcare providers and in participant views on not being offered a choice\u003c/p\u003e \u003cp\u003eWhen asked how choices were presented to participants at their most recent screen, fewer than half (19, 44%) recalled being offered a choice between self- and clinician-collected screening.\u003c/p\u003e \u003cp\u003eFor those who were offered a choice, the way this was presented varied (Table\u0026nbsp;\u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e3\u003c/span\u003e). Some felt that options were presented equally, and that the healthcare provider did not try to persuade them about either option. Others felt the healthcare provider either favoured clinician-collection or self-collection. Several participants were only offered self-collection after they had specifically asked about it.\u003c/p\u003e \u003cp\u003eMany participants who were not offered a choice had a clinician-collected sample taken. However, some of these participants were unsure if they had screened prior to, or after self-collection became universally available, or the consultation was related to follow up of a previous abnormal result meaning that self-collection may not have been clinically appropriate. This was confirmed for nine participants against the NCSR. Some participants were denied self-collection when requested as the healthcare provider believed it to be inferior to clinician-collection. Others had discussed self-collection at previous consultations, or had it presented as an option for their next screen after they were provided with a clinician-collected test.\u003c/p\u003e \u003cp\u003eInterviewed participants expressed a range of different emotions about not being provided with the choice of self-collection. This ranged from feeling ambivalent, disappointed, angry, or disempowered.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;I wasn\u0026rsquo;t fazed at the time that I wasn't offered it because I just assumed that it wasn't something that clinic offered. But now that I've discovered that I am eligible, and I probably should have been offered it, now I feel a bit \u0026hellip; why didn't I get that choice?\u0026rdquo; ID39\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab3\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 3\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eVariation in how cervical screening options were presented to screening participants, with supporting quotes\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTheme\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eSub-Theme\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eExample quotes\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"3\" rowspan=\"4\"\u003e \u003cp\u003eOffered Choice\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eOptions presented equally\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;she [GP] didn't try and steer me one way or the other\u0026hellip;she reassured me that it would be the exact same results\u0026rdquo; ID06\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eClinician-collected presented as superior\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;one of the things that she said was sometimes or often with self-collection if you don't do it right, you have to come back. And the GP has to do it anyway. So I think she sort of angled it a little bit as \u0026lsquo;if you're happy for me to do it, I might as well just collect it for you\u0026hellip;\u0026rdquo; ID02\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eSelf-collection presented as superior\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;I almost got the impression [that self-collection] was being encouraged over the GP doing it. And I didn\u0026rsquo;t want that [self-collection]\u0026rdquo; (ID87)\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eProvided choice after patient requested\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u003cem\u003e[Healthcare provider said] \u0026ldquo;of course, I can do that for you right now \u0026hellip;she was reflecting really positively on it and had no hesitation to give me what I needed.\u0026rdquo; (ID46)\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"4\" rowspan=\"5\"\u003e \u003cp\u003eNot Offered Choice\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eClinician-collection provided with no choice offered\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;It [self-collection] was not presented, there was no choice\u0026rdquo; (ID27)\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePotentially ineligible due to timing, gynaecologist and symptoms\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;I went to the gynaecologist ..not sure maybe 2021 or 2022 \u0026hellip;I can't remember\u0026rdquo; (ID35)\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eDenied self-collection when asked for it\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;I did ask if I'm eligible for self-collection, and she made it very clear that self-collection is not accurate, because people can't get their cervix. And that it's always better just to come to the clinic. So, I just went through with it.\u0026rdquo; (ID52)\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eDiscussed previously but patient booked for clinician-collection\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;I could have done it myself, but I was there for other things\u0026hellip;he has discussed it with me before\u0026rdquo; (ID51)\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eSelf-collection suggested for next screen only\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;after we did that screening, she said, \u0026lsquo;next time if you want to, we do have the option now for self-collection, that might be something you'd be interested in\u0026rdquo; (ID05)\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003ctfoot\u003e \u003ctr\u003e\u003ctd colspan=\"3\"\u003eTheme 3: The value in the choice itself, in the unique attributes of each option, and in the characteristics of the healthcare providers involved in cervical screening\u003c/td\u003e\u003c/tr\u003e \u003c/tfoot\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eOverwhelmingly, participants valued having screening choices, either for themselves or for others. Being provided with a choice was seen to enable people to choose an option that best suited their needs and provide autonomy over their own healthcare.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;So, I think there is definitely value in there being different options [for cervical screening] that are available. You can kind of pick the one that suits you or suits your needs at the time\u0026rdquo; ID21\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eFor many, self-collection was a favourable option when access was limited to a male, unfamiliar, or personally known healthcare provider, particularly in regional and remote areas. Others reported that they would continue to choose clinician-collection if they had access to their regular healthcare provider which they trust.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;Having a GP that I trust doing that [clinician-collection] was fine. If I was in a situation where I didn't have that kind of relationship with someone... I may feel different about a self-collection option.\u0026rdquo; ID02\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eThe features of self-collection that were valued by participants included increased autonomy and control over their screening experience, convenience and ease, privacy, flexibility of healthcare providers they could see for screening, and perceived opportunities to reduce costs. A commonly reported valued feature of self-collection was reduced discomfort \u0026ndash; both physical and psychological \u0026ndash; due to the less invasive nature of the test.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;I find Pap smears traumatic. And I find this [self-collection] option so unbelievably better. There is no comparison to me. It is so much less invasive. It is so much less stressful. ... There's no pain involved. ... To be able to do it and not feel so stressed about it is a real gift.\u0026rdquo; ID31\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eSome indicated that while self-collection was not their choice, they noted potential benefits for women with histories of trauma, stigma and discrimination in the healthcare system. This was confirmed by a participant from the LGBTQ\u0026thinsp;+\u0026thinsp;community, who described choosing to specifically travel to an inclusive healthcare provider for self-collection.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;When I reflect on what were the barriers or what internally stopped me from doing [cervical screenings] is that it is difficult to access that culturally appropriate service, especially in this sort of region. And once you have that service, you trust that service and rely on them. So both my gynaecologist and GP, I feel very comfortable with them, culturally, I feel very safe. So, I do make the distance [sic]\u0026rdquo; ID46\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eMany participants valued having a choice of where they could perform self-collection. Benefits of collection in the clinical setting, including clinic bathrooms or privately in consultations room, was the ability to ask their healthcare providers questions and complete the test immediately. For others, benefits of performing self-collection at home was viewed to provide flexibility, a greater sense of privacy, and potentially removing travel and cost barriers.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;[An option] where you can [self] collect in the privacy of your own home...makes it [cervical screening] really accessible and takes some of that cost element as well.\u0026rdquo;ID02\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eMany participants also expressed feeling reassured that a second appointment with the healthcare provider could be arranged if they had an abnormal result following self-collection and that this provided more impetus to engage in screening and follow-up.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;It [self-collection] removes the barriers for people avoiding to get tested [sic]. It's the first step because I think once you do that, you're more likely to go ahead with a speculum exam if you need one\u0026rdquo; ID01\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eFeatures of clinician-collection that participants valued included greater confidence in the accuracy of the result, trust in the skills of the healthcare provider, having a physical examination - particularly for those with previous abnormal results, and the convenience related to the time and cost of not returning for an additional cytology sample if an abnormal result was detected (Fig.\u0026nbsp;1).\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;Just the fact that the first time I did test positive for HPV, so I just wanted to make sure that someone that knew what they were doing, more than me, collected a sample\u0026rdquo; ID04\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eTheme 4 \u0026ndash; Variation in participants\u0026rsquo; confidence to self-advocate for preferred choice and the influence of power dynamics in clinical consultations\u003c/p\u003e \u003cp\u003eThere were differences in participants confidence to self-advocate for their preferred screening method. Several participants who had requested self-collection, but were denied the option, felt uninformed about their rights to challenge their healthcare provider. For others, their limited information about self-collection meant they were more likely to default to the method they were most familiar with, particularly when no choice was offered by their healthcare provider.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;I had heard about it [self-collection] quite a while ago \u0026hellip;And I'd forgotten that you could do it yourself at that [ appointment] stage. And the GP didn't give me the option\u0026hellip;it was just hop on the bed, and away she goes... Why did I not get the choice?\u0026rdquo; ID40\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eMany felt their confidence to self-advocate would be influenced by the power imbalances in a medical appointment, including a desire to maintain a good relationship with their healthcare provider or if the provider presented a strong argument for one option.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\"If the doctor thinks it [self-collection] is a bad idea then maybe it is, but also just not wanting to fight with your health practitioner. So, it's just not worth the argument\u0026rdquo; ID21\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eHowever, most participants expected to feel more confident advocating for their preferred option in the future once they were better informed. This was reflected by those participants who had a better understanding of their screening options already feeling more confident during the consultation.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;I think that's what supported me was having that knowledge already. And when my doctor said to me, are you due for a cervical screening test, I just knew straightaway how I wanted to proceed.\u0026rdquo; ID72\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eTheme 5: Inadequate information and resources to understand and enact decisions and identified support needs to guide informed choice\u003c/p\u003e \u003cp\u003eVery few participants received information about the accuracy of self-collection, and the likelihood of being HPV\u0026thinsp;+\u0026thinsp;and requiring follow up, either prior to or during their medical appointment, with most receiving only a verbal explanation. Many had also not received their reminder letter, and for those who had, many did not recall that it contained information about self-collection.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;There might have been [information about self-collection]. I wouldn\u0026rsquo;t have read it. I just saw the heading that said, you know, that it was due, so I booked it.\u0026rdquo; ID87\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eMost wanted more information to assist with understanding options and felt that cervical screening information should be promoted by healthcare providers as well as in familiar, everyday spaces such as public libraries and sporting clubs.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;Probably educating doctors, that it [self-collection] is reliable, and that it's trustworthy, and that the results are real. So that they are happy to promote it within their practices. But maybe out of the box ones, too, like libraries, where you do advertising through that sort of thing\u0026rdquo; ID31\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eParticipants called for clear and accessible information to compare their screening options, including step-by-step visual guides, links or QR codes for more information and endorsed by credible and trusted sources.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;A basic rundown of the \u0026hellip; pros and cons and \u0026lsquo;how to not-to\u0026rsquo; type things \u0026hellip; just a bit of reassurance. it's not too complex\u0026hellip; it is a straightforward thing to do\u003c/em\u003e\u0026rdquo; ID57\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eMost participants felt that the provision of information about their screening options ahead of the appointment would be beneficial, as it would allow them to feel better prepared and use the appointment to clarify concerns and raise preferences.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;I wish I had seen something before I went to see the doctor... because... I will read it, then I will ask questions, and then make an informed decision.\u0026rdquo;\u003c/em\u003e ID58\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eIn addition to greater support and resources to make decisions, some wanted structural system-level changes to access screening options and carry-out their choice, such as better access to GPs, different ways to access self-collection, and reduced medical fees.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003e\u0026ldquo;And I think they should also not be allowed to charge for it [cervical screening tests]. Because that's mainly what put me off is the cost. That more so than the discomfort of doing it [screening].\u0026rdquo; ID51\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eWe undertook an in-depth exploration of the awareness, knowledge and experiences of making cervical screening choices among recently screened women in one jurisdiction in Australia. Overall, participants highly valued the availability of the choice between self- and clinician-collected screening. However, most had low levels of knowledge and lacked decision support and access to timely resources to support decision making. While many participants place a high level of trust in their healthcare providers and value discussions with them, there were variations in how screening options were presented. We identified gaps in decisional support needs based on the ODSF and developed recommendations to address these (Fig.\u0026nbsp;3).\u003c/p\u003e \u003cp\u003eOur study revealed that while most people knew of self-collection, few had accurate knowledge about its eligibility, accuracy and how to access it. Previous studies have shown similar concerns about test accuracy and collecting the sample properly (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e, \u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e), although studies have also shown that screeners feel confident after trying it themselves (\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eDue to knowledge gaps and power imbalances within a clinical consultation, our participants\u0026rsquo; confidence to self-advocate for their preferred option was often low. Most participants expected to feel more confident once they were better informed, a theme that has been previously reported (\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e). To address these gaps, previous studies have called for greater clarity on where, and how, to access self-collection, tailored communication on its accuracy, ease, and privacy, and reiteration that the option for clinician-collection is still available (\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e, \u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eAs identified in our study, people want to see messages about the choices available to them in everyday spaces, in language they can understand, and reiterated within clinical interactions to build their trust and confidence. National campaigns promoting choice and autonomy have launched since data collection for this study (\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e, \u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e). Post campaign evaluations may determine if this need has been addressed.\u003c/p\u003e \u003cp\u003eIn addition to empowering screeners to self-advocate, ensuring healthcare providers are appropriately trained to present options in a balanced way is essential. Despite updated guidelines on self-collection, a range of healthcare provider-targeted resources on how to offer choice (\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e, \u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e), and accredited online education modules (\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e), provider adoption of self-collection into primary care remains varied (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e). Our findings reiterate the need for accessible, clear, and targeted communication and education for healthcare professionals that address ongoing concerns about missed opportunities for pelvic examinations, accuracy of self-collection, and patients\u0026rsquo; ability to correctly self-collect, to ensure full-scale adoption.\u003c/p\u003e \u003cp\u003eOur study found that people\u0026rsquo;s choices were impacted by the value they place on different attributes of each option. The \u0026lsquo;\u0026lsquo;risk\u0026rsquo;\u0026rsquo; of a second visit following self-collection was a disadvantage for some, worried about the cost and the time it would take, while others perceived it as reassuring. Informing people of this possibility could help inform screening decisions based on individual\u0026rsquo;s values. Decision aids have shown to improve patient knowledge, reduce decisional conflict, clarify values, and increase patient involvement in decision-making (\u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eOur study calls for widespread decision support tools to communicate to all stakeholders the equivalence in accuracy between screening options and key trade-offs, including explaining how and why they are equivalent (because HPV is shed from the cervix into the vagina if an infection is present). A simple one-page infographic could be used to highlight these key areas for all people considering their cervical screening options, with provision of links (via QR codes or to a website) or additional hard copy resources for those who want to know more. Recently a cervical screening decision aid was developed and tested with 360 women attending a Gynaecology Outpatient Clinic within the Australian context (\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e), but it did not include information on the risk of a return visit for those who test positive on a self-collected swab. A Canadian online preference-elicitation tool for cervical screening modalities, based on decision-making concepts and validated against the ODSF, found preliminary evidence supporting participants in identifying informed, values-based cervical screening preferences (\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e). Additionally, a recent UK study developed a comprehensive decision support strategy in preparation for the introduction of the choice of self-collection within their screening program (\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e). These existing resources could be adapted to the Australian context to support potential screeners in understanding their options and be active in their decision-making.\u003c/p\u003e \u003cp\u003eWe found inconsistencies in participants receiving reminder letters and missed opportunities to raise awareness of self-collection. Reminder systems to alert people they are due for screening provide an opportunity to improve knowledge of options prior to consultations. Australia\u0026rsquo;s NCSR has recently launched a participant portal, which could be more widely promoted (\u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e). This could further facilitate participants autonomy to check their own screening history and become informed about screening options.\u003c/p\u003e \u003cp\u003eParticipants felt self-collection would be more advantageous if it could reduce appointment costs and was more accessible. Australia\u0026rsquo;s guidelines support flexibility in where self-collection can be offered, and by which healthcare provider (\u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e), enabling nurses and Aboriginal health workers/practitioners who are highly trusted by the community (\u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e, \u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e) to discuss screening options. New funding models to allow these professionals to independently request and be reimbursed by Medicare, alongside access to the NCSR, could support information provision and outreach initiatives, a key enabler to engaging under screened populations (\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e). The development of integrated pathways to ensure continuity of care, where referral is needed for those testing positive for HPV, is now a policy priority.\u003c/p\u003e \u003cp\u003eTo address these decisional gaps and support needs, we recommend four key actions:\u003c/p\u003e \u003cp\u003e\u003col\u003e\u003cspan\u003e\u003cli\u003e\u003cp\u003eBuild on existing national campaigns by making tailored resources available through channels relevant to different communities to address inadequate knowledge and support informed decision-making\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003cspan\u003e\u003cli\u003e\u003cp\u003eDevelop decision support tools that clearly articulate key trade-offs between screening options\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003cspan\u003e\u003cli\u003e\u003cp\u003eMonitor the roll out of updated training resources for healthcare providers, to ensure consistent presentation of screening options in line with NCSP guidelines\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003cspan\u003e\u003cli\u003e\u003cp\u003eImprove system accessibility by reducing appointment costs, supporting flexible ways to access self-collection and exploring new funding models to promote broader workforce involvement in screening, enabling people to enact the decisions they make\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003c/ol\u003e\u003c/p\u003e\n\u003ch3\u003eStrengths and Limitations\u003c/h3\u003e\n\u003cp\u003eInterviews informed by the ODSF helped to explore key decisional needs influencing the experiences and choices of cervical screening among recently screened women. Our study found reasonable accuracy of the self-reported data via NCSR validation, despite being limited in which variables were permitted to be used for matching screening histories. Limiting participants to those one year post previous screen was intentional to reduce recall bias. The study was not promoted as a study about \u0026lsquo;self-collection\u0026rsquo; but of cervical screening, which reduced the risk of bias in recruiting those offered or not offered the choice.\u003c/p\u003e \u003cp\u003eOur study sample were highly educated people who mostly spoke English as a first language, only a small number identified as LGBTQI\u0026thinsp;+\u0026thinsp;and just over a quarter lived outside a metropolitan area which limits the generalisability of our findings.\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003e Australia\u0026rsquo;s national guidelines for cervical screening emphasise providing people with an informed choice of screening option. Overwhelmingly, participants valued the inclusion of the choice between self- and clinician-collected screening, as this was seen to empower decision-making and allow people to choose the option that suited them best.\u003c/p\u003e \u003cp\u003eHowever, we found that very few people were making informed choices that aligned with their values because they had low levels of knowledge, felt uninformed about options, did not have an accurate perception of their risk or outcomes of each screening modality (such as efficacy and likelihood of being HPV+) and many were not participating in decision-making because this was being controlled by the healthcare provider (either by not providing them with options, attempting to sway them toward a particular option, or denying them an option when requested). A range of strategies are needed to ensure screeners feel empowered, supported and informed to make and carry out a real choice including widespread promotion, decision support tools, appropriately training healthcare providers and system improvements.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eCancer Council Australia [Internet] [cited 2025 Mar 6]. Cervical Cancer Screening Program Guidelines. Available from: \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://www.cancer.org.au/clinical-guidelines/cervical-cancer/cervical-cancer-screening\u003c/span\u003e\u003cspan address=\"https://www.cancer.org.au/clinical-guidelines/cervical-cancer/cervical-cancer-screening\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eAustralian Institute of Health and Welfare [Internet] (2024) [cited 2025 Mar 6]. 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Available from: \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://www.health.gov.au/sites/default/files/2023-11/national-strategy-for-the-elimination-of-cervical-cancer-in-australia.pdf\u003c/span\u003e\u003cspan address=\"https://www.health.gov.au/sites/default/files/2023-11/national-strategy-for-the-elimination-of-cervical-cancer-in-australia.pdf\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eGannon M, Dowling M (2008) Increasing the uptake of cervical screening programmes. Br J Nurs Mark Allen Publ 17(20):1280\u0026ndash;1284\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eJaenke R, Butler TL, Condon J, Garvey G, Brotherton JML, Cunningham J et al (2021) Health care provider perspectives on cervical screening for Aboriginal and Torres Strait Islander women: a qualitative study. Aust N Z J Public Health 45(2):150\u0026ndash;157\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eCosta T, Bateson D, Woo YL (2024) Enhancing equity in cervical screening - initiatives to increase screening participation. Curr Opin Obstet Gynecol 36(5):345\u0026ndash;352\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[{"identity":"d2822068-0283-44b8-b44a-2d0e2bebaa35","identifier":"10.13039/501100004752","name":"State Government of Victoria","awardNumber":"CPSRG19022","order_by":0}],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":true,"hideJournal":false,"highlight":"","institution":"University of Melbourne","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"Cervical screening, self-collection, qualitative, information, choice, decision, implementation","lastPublishedDoi":"10.21203/rs.3.rs-6515903/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-6515903/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAustralia’s Human papillomavirus (HPV) based National Cervical Screening Program guidelines state that anyone eligible for screening should be offered a choice of using self-collection or clinician-collection for initial screening.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAim:\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eTo explore the awareness and experiences of Victorian women and people with a cervix who had screened since this choice became available in July 2022.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eSemi-structured interviews were conducted with 43 people. who self-reported a cervical screen within 12 months of our study. Interview data were thematically analysed and mapped to The Ottawa Decision Support Framework. Self-reported screening history was confirmed with de-identified data from the National Cancer Screening Register (NCSR) Victorian Raw Data Extract (November 2024).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eFewer than half (19, 44%) of those interviewed were given a choice at their most recent screen, with variation in how options were presented by healthcare providers. Participants felt they lacked awareness and knowledge to feel confident in their options.\u003c/p\u003e\n\u003cp\u003eMost participants viewed having a choice as important and, even if they did not prefer self-collection for themselves, noted benefits for others. Some felt disappointed or angry about not having a choice, while others were happy to defer to their doctor.\u003c/p\u003e\n\u003cp\u003eRelationships with, and the views of, healthcare providers strongly influenced decision-making. Participants reflected on potential advantages of self-collection if it could reduce the cost of appointments and be accessed in more flexible ways.\u003c/p\u003e\n\u003cp\u003eAmong the 38 participants who consented to screening history verification, the self-reported data showed reasonable accuracy (67%) against the NCSR.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusion\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eDespite a clear policy directive for practitioners to offer a choice to all eligible individuals, many recent screeners were not offered the choice or lacked knowledge, confidence, and decision supports needed to make an informed choice. The choice of screening method appears strongly influenced by if, and how, options are presented by healthcare providers. A range of strategies are needed to ensure screeners feel empowered, supported and informed to make and carry out a real choice.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003ePatient or Public Contribution\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eMembers of the public were involved in interviews. Findings were summarised and disseminated via a short report. A consumer advisory panel provided feedback on the content, readability and length of all patient facing resources.\u003c/p\u003e","manuscriptTitle":"“Why didn’t I get that choice?”: A qualitative exploration of how cervical screening choices are presented by healthcare providers and understood by screen-eligible people in Australia, two years after self-collection became an option for all","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-05-05 09:40:32","doi":"10.21203/rs.3.rs-6515903/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"810061de-b7ea-40e0-94cd-4b846c3076df","owner":[],"postedDate":"May 5th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[{"id":47833882,"name":"Health Policy"},{"id":47833883,"name":"Preventive Medicine"},{"id":47833884,"name":"Sexual \u0026 Reproductive Medicine"},{"id":47833885,"name":"Women's studies"}],"tags":[],"updatedAt":"2025-09-04T17:31:15+00:00","versionOfRecord":{"articleIdentity":"rs-6515903","link":"https://doi.org/10.1111/hex.70397","journal":{"identity":"health-expectations","isVorOnly":true,"title":"Health Expectations"},"publishedOn":"2025-08-19 00:00:00","publishedOnDateReadable":"August 19th, 2025"},"versionCreatedAt":"2025-05-05 09:40:32","video":"","vorDoi":"10.1111/hex.70397","vorDoiUrl":"https://doi.org/10.1111/hex.70397","workflowStages":[]},"version":"v1","identity":"rs-6515903","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-6515903","identity":"rs-6515903","version":["v1"]},"buildId":"XKTyCvWXoU3ODBz1xrDgd","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}