Experience of HPV primary screening: a cross-sectional survey of ‘Let’s test for HPV’ study participants in Aotearoa New Zealand
Sally B. Rose
1 * , Lynn McBain 1 , Rebecca Bell 2 , Carrie Innes 2 , Sarah Te Whaiti 2 , Alexandria Tino 2 , Peter Sykes 2
1
2
Abstract
In 2022–2023, a multi-region implementation study (‘Let’s test for HPV’) was undertaken in New Zealand primary care to inform the National Cervical Screening Programme shift to human papillomavirus (HPV) primary screening in September 2023.
This study aimed to describe ‘Let’s test for HPV study participants’ experiences with HPV primary screening.
Implementation study participants were invited to complete an anonymous online survey in September 2023. Survey data were summarised using descriptive statistics. Free text comments were analysed using inductive thematic analysis.
Forty-two percent of those invited began a survey (969/2302) and 921 were included in analyses. Respondents were aged 24–71, represented each of the three regions of New Zealand and different ethnic groups and included never and under-screened participants. Most people chose to self-test for comfort, convenience and privacy. Gaps were identified in participant understanding about HPV, how HPV testing differs from cervical cytology and the implications of HPV test results. Key topics requiring further explanation were identified by participants. Around 8% did not find self-testing easy or comfortable. Intent to screen again was high (92.4%), with greater preference for self-testing at home (48.2%) over the GP practice (33.5%).
HPV primary screening incorporating the option to self-test was highly acceptable to primary care-based study participants. Despite having participated in the new pathway, knowledge gaps were evident. Clear communication from screen-takers will be key to support participant knowledge, understanding and confidence in the efficacy of HPV primary screening. Ongoing programme evaluation, including patients’ perspectives, will be essential in the pursuit of equity and progress towards cervical cancer elimination.
Keywords: cervical cancer, cervical screening, human papillomavirus (HPV), self-sampling, self-test, survey, patient perspectives.
References
1 World Health Organization. Eliminating cervical cancer. 2020. Available at https://www.who.int/publications/i/item/9789240014107 [accessed 11 September 2024].
2 Burd EM. Human papillomavirus and cervical cancer. Clin Microbiol Rev 2003; 16(1): 1-17.
| Crossref | Google Scholar | PubMed |
3 Koliopoulos G, Nyaga VN, Santesso N, et al. Cytology versus HPV testing for cervical cancer screening in the general population. Cochrane Database Syst Rev 2017; 8: CD008587.
| Crossref | Google Scholar | PubMed |
4 Best Practice Advocacy Centre (BPAC) New Zealand. Cervical cancer - early detection and referral. 2022. Available at https://bpac.org.nz/2022/docs/cervical-cancer.pdf [accessed 12 September 2024].
5 Ronco G, Dillner J, Elfström KM, et al. Efficacy of HPV-based screening for prevention of invasive cervical cancer: follow-up of four European randomised controlled trials. Lancet 2014; 383(9916): 524-32.
| Crossref | Google Scholar | PubMed |
6 Arbyn M, Smith SB, Temin S, et al. Detecting cervical precancer and reaching underscreened women by using HPV testing on self samples: updated meta-analyses. BMJ 2018; 363: k4823.
| Crossref | Google Scholar | PubMed |
7 Nelson EJ, Maynard BR, Loux T, et al. The acceptability of self-sampled screening for HPV DNA: a systematic review and meta-analysis. Sex Transm Infect 2017; 93(1): 56.
| Crossref | Google Scholar | PubMed |
8 Brewer N, Foliaki S, Bromhead C, et al. Acceptability of human papillomavirus self-sampling for cervical-cancer screening in under-screened Māori and Pasifika women: a pilot study. N Z Med J 2019; 132(1497): 21-31.
| Google Scholar | PubMed |
9 Adcock A, Cram F, Lawton B, et al. Acceptability of self-taken vaginal HPV sample for cervical screening among an under-screened Indigenous population. Aust N Z J Obstet Gynaecol 2019; 59(2): 301-07.
| Crossref | Google Scholar | PubMed |
10 MacDonald EJ, Geller S, Sibanda N, et al. Reaching under-screened/never-screened indigenous peoples with human papilloma virus self-testing: a community-based cluster randomised controlled trial. Aust N Z J Obstet Gynaecol 2021; 61(1): 135-41.
| Crossref | Google Scholar | PubMed |
11 Brewer N, Bartholomew K, Grant J, et al. Acceptability of human papillomavirus (HPV) self-sampling among never- and under-screened Indigenous and other minority women: a randomised three-arm community trial in Aotearoa New Zealand. Lancet Reg Health West Pac 2021; 16: 100265.
| Crossref | Google Scholar | PubMed |
12 Health New Zealand Te Whatu Ora. National Cervical Screening Programme Coverage Report; Wellington: Health New Zealand. 2024. Available at https://tewhatuora.shinyapps.io/nsu-ncsp-coverage/ [accessed 11 November 2024].
13 Adcock A, Stevenson K, Cram F, et al. He Tapu Te Whare Tangata (sacred house of humanity): under-screened Māori women talk about HPV self-testing cervical screening clinical pathways. Int J Gynaecol Obstet 2021; 155(2): 275-81.
| Crossref | Google Scholar | PubMed |
14 Camara H, Zhang Y, Lafferty L, et al. Self-collection for HPV-based cervical screening: a qualitative evidence meta-synthesis. BMC Public Health 2021; 21(1): 1503.
| Crossref | Google Scholar | PubMed |
15 Brewer N, Foliaki S, Gray M, et al. Pasifika women’s knowledge and perceptions of cervical-cancer screening and the implementation of self-testing in Aotearoa New Zealand: a qualitative study. Lancet Reg Health West Pac 2022; 28: 100551.
| Crossref | Google Scholar | PubMed |
16 Health New Zealand Te Whatu Ora. About HPV screening. 2024. Available at https://www.tewhatuora.govt.nz/health-services-and-programmes/ncsp-hpv-screening/about-hpv-screening [accessed 30 October 2024].
18 Ronco G, Giorgi-Rossi P, Carozzi F, et al. Efficacy of human papillomavirus testing for the detection of invasive cervical cancers and cervical intraepithelial neoplasia: a randomised controlled trial. Lancet Oncol 2010; 11(3): 249-57.
| Crossref | Google Scholar | PubMed |
19 Bromhead C, Wihongi H, Sherman SM, et al. Human Papillomavirus (HPV) self-sampling among never-and under-screened Indigenous Māori, Pacific and Asian women in Aotearoa New Zealand: a feasibility study. Int J Environ Res Public Health 2021; 18(19): 10050.
| Crossref | Google Scholar | PubMed |
20 Sherman SM, Brewer N, Bartholomew K, et al. Human papillomavirus self-testing among unscreened and under-screened Māori, Pasifika and Asian women in Aotearoa New Zealand: a preference survey among responders and interviews with clinical-trial nonresponders. Health Expect 2022; 25(6): 2914-23.
| Crossref | Google Scholar | PubMed |
21 Borchowsky K, Rush M, Mullally T, et al. Primary care experiences in the ‘Let’s test for HPV’ study: a qualitative analysis. J Prim Health Care 2023; 15(2): 147-54.
| Crossref | Google Scholar | PubMed |
22 O'connor M, Costello L, Murphy J, et al. ‘I don’t care whether it’s HPV or ABC, I just want to know if I have cancer.’ Factors influencing women’s emotional responses to undergoing human papillomavirus testing in routine management in cervical screening: a qualitative study. Bjog 2014; 121(11): 1421-9.
| Crossref | Google Scholar | PubMed |
23 Sultana F, Mullins R, English DR, et al. Women’s experience with home-based self-sampling for human papillomavirus testing. BMC Cancer 2015; 15: 849.
| Crossref | Google Scholar | PubMed |
24 Tiro JA, Betts AC, Kimbel K, et al. Understanding Patients’ Perspectives and Information Needs Following a Positive Home Human Papillomavirus Self-Sampling Kit Result. J Womens Health (Larchmt) 2019; 28(3): 384-92.
| Crossref | Google Scholar | PubMed |
25 Dodd RH, Mac OA, McCaffery KJ. Women’s experiences of the renewed National Cervical Screening Program in Australia 12 months following implementation: a qualitative study. BMJ Open 2020; 10(7): e039041.
| Crossref | Google Scholar | PubMed |
26 McBride E, Tatar O, Rosberger Z, et al. Emotional response to testing positive for human papillomavirus at cervical cancer screening: a mixed method systematic review with meta-analysis. Health Psychol Rev 2021; 15(3): 395-429.
| Crossref | Google Scholar | PubMed |
27 Creagh NS, Zammit C, Brotherton JM, et al. The experience of under-screened and never-screened participants using clinician-supported self-collection cervical screening within the Australian National Cervical Screening Program. Womens Health 2022; 18: 17455065221075905.
| Crossref | Google Scholar | PubMed |
28 Rose SB, McBain L, Bell R, et al. “Kind of scared but happy something was detected.” Cross-sectional survey of Let’s test for HPV participants to understand perspectives on an HPV detected result. Aus NZ J Obstet Gyn 2024; In production.
| Crossref | Google Scholar |
29 Rose SB, McBain L, Garrett SM, et al. “I felt so empowered, respected and shame free.” Let’s test for HPV participants’ experience of HPV primary screening. J Prim Health Care 2024;
| Crossref | Google Scholar |
30 Ministry of Health. Ethnicity data protocols. HISO 10001:2017. Wellington, Ministry of Health. 2017. Available at https://www.tewhatuora.govt.nz/assets/Our-health-system/Digital-health/Health-information-standards/HISO-10001-2017-Ethnicity-Data-Protocols.pdf [accessed 1 November 2024].
31 Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol 2006; 3(2): 77-101.
| Crossref | Google Scholar |
32 Health New Zealand Te Whatu Ora. Screening Support Services in Aotearoa New Zealand. 2024; Available at https://info.health.nz/keeping-healthy/cancer-screening/screening-support-services-in-aotearoa-new-zealand [accessed 13 November 2024].
33 Waller J, Waite F, Marlow L. Awareness and knowledge about HPV and primary HPV screening among women in Great Britain: an online population-based survey. J Med Screen 2024; 31: 91-98.
| Crossref | Google Scholar | PubMed |
34 Kola-Palmer S, Dhingra K. Awareness and knowledge of human papilloma virus in UK women aged 25 years and over: results from a cross-sectional internet-based survey. Eur J Cancer Care (Engl) 2020; 29(1): e13181.
| Crossref | Google Scholar | PubMed |
35 Ingamells S, Bell R, Nip J, et al. 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. NZ Med J 2024; 137(1590): 57-76.
| Crossref | Google Scholar | PubMed |
36 Chorley AJ, Marlow LA, Forster AS, et al. Experiences of cervical screening and barriers to participation in the context of an organised programme: a systematic review and thematic synthesis. Psychooncology 2017; 26(2): 161-72.
| Crossref | Google Scholar | PubMed |
37 Wearn A, Shepherd L. Determinants of routine cervical screening participation in underserved women: a qualitative systematic review. Psychol Health 2024; 39(2): 145-70.
| Crossref | Google Scholar | PubMed |
