Perceived barriers to self-collected HPV testing for cervical cancer screening, and knowledge of HPV: a survey of primary healthcare smear-takers across Aotearoa New Zealand

Cervical cancer is diagnosed in around 160 people per year in Aotearoa New Zealand, with 50 dying of the disease.¹ The National Cervical Screening Programme (NCSP) has set a 3-year coverage target of 80% of eligible people to be screened. However, in 2022 screening rates sat at 67.3%. Coverage rates by ethnicity were 78% for non-Māori and 62% for Māori, highlighting ongoing disparities within the screening programme.²

Primary human papillomavirus (HPV) testing is now established as a more sensitive screening method than cervical cytology. Modelling predicts that the introduction of primary HPV screening in Aotearoa New Zealand will reduce cervical cancer incidence by 12–16%.³ In September 2023, the NCSP changed the primary screening method of cervical cancer screening from cervical cytology to HPV testing, offering screen-eligible people the primary option of a self-collected HPV test.⁴ This self-collected HPV test is offered at the clinic; this has not yet been rolled out for self-testing at home.⁵

Previous research indicates that people find HPV self-collection to be highly acceptable,^6–9 particularly as a home-testing option within under- or never-screening populations, with the exciting opportunity to reduce inequities in cervical cancer incidence and outcomes in this under-served population.⁹

Additionally, clinicians strongly support HPV screening, both for clinician and patient-collected samples.^10,11 However, some concerns exist about HPV testing, particularly with regards to accuracy.^12,13 Additionally, knowledge about HPV, its causative role in cervical cancer and its reliability as a primary screening tool has been shown to be lacking across primary care providers,^11,12,14 including in Aotearoa New Zealand.¹²

Little is known about the readiness of primary care across the country for the roll-out of primary HPV self-testing for cervical cancer screening and the anticipated challenges that this change will bring. It is important to ensure that primary care staff have adequate knowledge around the reasons behind the change to HPV screening, and for potential logistical challenges to be addressed, both for primary care practices and their patients.

Within Aotearoa New Zealand, a pilot HPV cervical cancer screening programme (“Let’s Test for HPV”) was conducted in 17 “pilot-centre” general practices. The aim of this study was to explore extent of knowledge about the role of HPV in cervical cancer and the use of primary HPV testing for cervical cancer screening among smear-takers at these pilot centres.

Further objectives were to identify learning needs (to enable the creation of tailored learning packages regarding the new NCSP guideline) and identify potential barriers to the HPV screening programme to inform the NCSP national roll-out and therefore proactively address foreseeable challenges.

Methods

This is a questionnaire study, with data from a closed structured web-based questionnaire (please see Appendix 1 for further questionnaire details). Ethical approval was gained prior to the initiation of the study from the University of Otago Ethics Committee (D22/175.). The “Let’s Test for HPV” Māori advisory group was consulted to provide feedback and approve the questionnaire. A Māori Health Advancement Review was undertaken by the University of Otago. Input on the questionnaire design was gathered from key stakeholders (general practitioners and practice nurses who were not potential participants in the study) following a questionnaire pre-test by these stakeholders. Previous questionnaires used for exploring HPV knowledge were reviewed by the study team and not felt to be appropriate to answer the specific aims and objectives of this study.^12,14–16 Questions were designed to cover three main knowledge areas: general HPV knowledge, benefits of HPV testing over traditional cervical cytology and clinical management of HPV results. Further questions were asked about logistical barriers, recall responsibility and educational needs. All questions were multiple choice, with space for free text when “other” was an option.

The questionnaire was sent via individual email link to an online questionnaire platform (SurveyMonkey) to all potential participants, who were all smear-takers at the practices taking part in the “Let’s Test for HPV” study. The 17 practices are located in Canterbury, Wellington and Whanganui. Prior to the study, these practices had received an educational document covering HPV and the role of HPV testing for cervical screening, as well as links to further educational resources. The questionnaire invitation was sent out in a rolling fashion from 5 August 2022. The individual email link was only valid for one questionnaire completion. The use of an individual email link reduced the risk of non-invited participants completing the questionnaire. Email reminders were sent out to those who had yet to complete the questionnaire for 8 weeks. After this point, participants were felt to have declined and the questionnaire was closed (final closure date was 22 November 2022).

Participant information was given on the opening page of the questionnaire, and participants gave informed consent at the start of the questionnaire. Answers to the knowledge questions were provided at the end of the questionnaire, with participants unable to return to the questionnaire from this final page. There were no adaptive questions within the questionnaire. There was a total of 23 questions, split into four sections. All questions (except the last question, which was a free-text question for any further comments) were mandatory and enforced using JavaScript.

Data were then collated, and summary statistics prepared using Microsoft Excel. Ethnicity was recorded as total response ethnicity (no participants reported more than one ethnicity).¹⁷ Free-text answers were descriptively analysed.

Results

Of the 116 invitations, responses were received from 73 people, of which 67 completed the whole questionnaire. This gave a partial completion rate of 62.9% and a total completion rate of 57.8%. All supplied data have been analysed to value all supplied data. The average time taken to complete the questionnaire was 7 minutes and 57 seconds.

Demographics

Respondent ages ranged widely and were most frequently in the 55–64-year age group (30.1% of total). They predominantly identified as female (87.7%) and NZ European (72.6%). Please see Table 1 for further demographics information.

Most participants identified their work role as a practice nurse (52.1%), followed by general practitioner (31.5%) and nurse practitioner (6.9%). Survey respondents were predominantly frequent smear-takers (with 60.3% reporting that they take smears at least once per week) and worked in an urban environment. Almost half (49.3%) of participants reported that they work in a practice with a higher-than-average Māori population and almost one third (32.8%) reported that they work in a practice serving a higher-than-average Pasifika population.

View Table 1–4, Graph 1–2.

Knowledge of HPV

The average score for the “Knowledge of HPV” was 56.5%, with a range of 20–100% for the 69 respondents who completed this section (see Graph 1). Each question was answered correctly or incorrectly, scores were summated and each participant was given an average score out of 100%.

Please see Table 2 for the summary of results of the questionnaire section around knowledge of HPV, cervical cancer and HPV screening. Please see Appendix 2 for further details of the respondent answers.

Knowledge of the two main HPV types causing cervical cancer was very high, with 92.8% answering correctly. While only 49.3% correctly answered the question around HPV frequency in sexually active people, there was a trend to overestimate the frequency, with a further 27.5% answering that they believed 90% of sexually active people are exposed to HPV.

With regards to awareness of the relative reliability of HPV screening and cervical cytology, 60.9% of respondents knew that HPV screening misses approximately 5% of high-grade changes or cervical cancer, whereas only 18.8% knew that cervical cytology misses approximately 20–30%. However, with both screening modalities, approximately one third of respondents answered “don’t know/not sure”. Additionally, only 20.3% knew that HPV testing is better at detecting glandular abnormalities, with 50.7% believing cervical cytology to be superior and a further 24.6% answering “don’t know/not sure”.

There was very good knowledge around the comparability of clinician-collected and patient self-collected samples (with 79.7% answering correctly) and management of red flag symptoms (with 89.9% answering correctly).

However, knowledge of the proposed NCSP guidelines around management of recall and positive results was low, with correct answers ranging between 46.4–58.0%.

Anticipated issues implementing the HPV home self-testing programme

Please see Graph 2 for full details. The overall challenges to patient home HPV self-testing were felt to be largely “not at all” to “mildly challenging”. However, over 50% of respondents felt that ensuring that the patient physically performs the HPV test was felt to be “moderately” to “extremely challenging”. The second most difficult anticipated issue was following up on the test if it was not performed. Participants felt that getting the result to the responsible clinician was the least challenging aspect of the new screening programme, preceded by informing the patient of the result and any follow up actions required.

Participants felt that the responsibility of communicating the need for cervical screening recall should largely fall to the practice (74.6%), followed by the NCSP at 55.2% (see Table 3 for further details).

Educational needs

Participants identified ongoing needs for further education, with 73.3% requesting further education regarding the clinical management of results in the new HPV screening programme, 61.7% requesting further details on the reliability of HPV screening and 55.0% wanting further details on the practical aspects of the HPV testing. Please see Table 4.

Free-text comments about the proposed NCSP HPV testing cervical screening programme

Respondents expressed a need for information regarding patient frequently asked questions that clinicians may be asked, and one respondent queried what public education will be carried out. One respondent commented that screening should be free.

There were positive comments left via free text by 11.0% of respondents about the HPV self-testing screening option.

Discussion

The findings of this study indicate knowledge deficits regarding HPV testing for cervical cancer screening and a desire for the provision of further education. Overall, respondents felt that no major barriers to the implementation of HPV self-testing would occur.

We believe that the demographic of respondents of this study are largely reflective of the primary healthcare workforce across Aotearoa New Zealand,^18,19 with the exception that the respondents over-represent the workforce working in higher-than-average Māori and Pasifika populations. Given that the current cervical screening programme is currently under-serving both populations, this over-representation may help to reduce inequities by mitigating anticipated challenges that Māori and Pasifika screening-eligible people may face in the new screening programme.

HPV knowledge

Overall, while there were displayed several areas of strong HPV and cervical screening knowledge, there remain significant knowledge deficits regarding key components of the programme. This is despite Aotearoa New Zealand using HPV testing within the screening programme since 2009,²⁰ as well as the provision of educational material prior to the survey commencing. While this survey gathered information from smear-takers, it is likely that knowledge deficits will be found among screening-eligible people and the general public.

Previous research also indicates knowledge deficits around HPV.^12,14 Our study showed improved knowledge within Aotearoa New Zealand around HPV infection rates: a 2016 survey showed that 24.7% of participants thought that most sexually active people will not get HPV at some point in their lives,¹² whereas the participants in this survey overestimated the frequency of HPV infections. This is especially important as stigma around HPV infection has long been present,^21–24 which impacts not only on vaccination rates but also among negative feelings and perceptions when encountering positive results. Therefore, it may be preferable that clinicians overestimate this frequency as this may help normalise and de-stigmatise HPV infections.

Overall knowledge around the benefits of HPV testing as compared to cervical smears was varying. Respondents were aware that HPV testing is minimally affected by whether a healthcare professional or the patient takes the test. However, the reliability of cervical smears for detecting high grade changes, cervical cancer and glandular abnormalities was notably overestimated. One of the key benefits of HPV testing is its ability to detect more glandular abnormalities, something that has been relatively unaffected by the current cervical cytology screening programme.²⁵

Knowledge of the management of HPV screening intervals and management of positive results was generally poor. Half of respondents knew that the new recommended screening interval will be 5 years (with a negative HPV result), but one third believed that it would still be 3 years. These results indicate the importance of clear information and education around the introduction of the new NCSP programme.

It is reassuring that there is high awareness that an HPV test cannot be used as a proxy for a clinical review and examination for patients presenting with concerning “red flag” symptoms of pathology. While it still concerning that 10% of participants did not know this, Australian research indicated up to 29% of cervical-screening practitioners are still unaware of the correct management of symptomatic screen-eligible people, despite the change to HPV testing 5 years prior.¹⁶

Challenges

The overall challenges to HPV self-testing at home were felt to be largely “not at all” to “mildly challenging”, which indicates that smear-takers in Aotearoa New Zealand do not anticipate significant challenges with this national roll-out option. The exceptions are the issue of following up on the test if it was not performed and ensuring that patients perform the HPV self-test, which was felt to be at least “moderately” to “extremely challenging”. Robust systems and guidance need to be put into place to help both primary healthcare and screening-eligible people to access home self-screening. This is particularly important, as previous research within Aotearoa New Zealand has shown this option to have significantly increased uptake among the under- and never-screened population, compared to self-testing at the clinic.^8,9 It is important that Aotearoa New Zealand learns from other countries’ experience in implementing HPV testing. For example, Australia has struggled with the successful implementation of self-testing, with issues cited to be inadequate consultation and engagement of their indigenous population.²⁶

Previous research has indicated that Aotearoa New Zealand has been slow to adopt centralised healthcare pathways due to a mixture of preference and a long-entrenched healthcare system.²⁷ However, while smear-takers in Aotearoa New Zealand seem to generally support the ongoing model of local-based, decentralised care primarily (by indicating they felt that practices should be primarily responsible for cervical screening recall), they may be open to a national centralised lead. This is important, as the formation of the new national health body Te Whatu Ora – Health New Zealand may offer an opportunity for cervical screening (as well as other screening programmes) to be more centralised. It is important for Te Whatu Ora – Health New Zealand to understand the trend towards preference for the continuation of locally based care, in order to establish a system that does not alienate primary healthcare, as has been seen in some other countries.²⁷

Further education

A large proportion of respondents would like further education about HPV, with an emphasis on the clinical management of results and the reliability of HPV testing in the context of cervical screening. This echoes education requests in other countries prior to the introduction of HPV screening²⁰ and also echoes the results of the “HPV Knowledge” section of our questionnaire. Reassuringly, Te Whatu Ora – Health New Zealand has already provided learning resources regarding the new NCSP guideline to meet this demand,²⁸ which are more extensive than the learning packages provided prior to the commencement of this study.

While we did not seek out overall feelings about the introduction of HPV screening, the free-text comments were predominantly positive about the introduction of HPV screening, with many welcoming its introduction as soon as possible, reflecting prior research.¹¹

Strengths and limitations

The authors feel that the sample was reflective of the primary care smear-taking population, with a high completion rate of 57% that is comparable to previous published surveys on the topic.¹¹ However, completion bias may be present, with those who felt their knowledge to be weaker less likely to complete the survey.

Respondents were from primary care practices that had already agreed to participate in recruitment for the “Let’s Test for HPV” study, and therefore some may have already completed their own learning on the topic. Thus, this study may have found a higher level of HPV knowledge than the general smear-taking population at the present time. However, the authors feel that a similar level of pre-reading in the general smear-taking population is likely to occur with the national roll-out of the HPV screening programme.

Conclusion

The findings of this study indicate existence of knowledge deficits about HPV testing, with a desire for provision of further education prior to the national roll-out of the new NCSP. Overall, respondents felt that no major barriers to the implementation of HPV home self-testing would occur. We have displayed a snapshot of knowledge and attitudes in primary care, which provides some guidance to the development of educational materials and policy for the new HPV screening programme.

View Appendices.