‘I felt so empowered, respected and shame free.’ Let’s test for HPV participants’ experience of HPV primary screening

Introduction Aotearoa New Zealand's National Screening Unit (NSU) moved to use of human papillomavirus (HPV) primary screening in November 2023. Aims This study aimed to evaluate participants' views on favourable and unfavourable elements of HPV primary screening and to seek suggestions for potential improvements. Method Primary care participants in a multi-region HPV primary screening implementation study were invited to complete an online follow-up survey in September 2023. This paper reports on qualitatively analysed responses to open-ended questions asking participants what they liked, disliked or thought could be improved for future screening participants. Results Of 2361 invitations sent, 2302 were delivered, 969 people consented to participate and 921 were included in analyses (40%, 921/2302). Respondents were 24-71 years of age, from three regions, different ethnic groups and included under-screened participants. Most had chosen to self-test (92%) and 28.9% self-tested at home. Three quarters shared comments about what they liked, with themes related to ability to self-test, avoiding cervical tests, choice, communication and support. Twenty percent described unfavourable aspects, with themes related to inadequate information, self-testing issues, inappropriate physical space and process and programme-related factors. Seven key recommendations were identified from suggestions about potential improvements for future screening participants. Conclusion Survey participants' experience of HPV primary screening was overwhelmingly positive, with choice of a self-test a clear benefit for most. Inadequate information or communication contributed to suboptimal experiences for some. Participant recommendations highlight practical steps screen-takers (and the NSU) could take to ensure screening participants receive a well-informed, affirming experience that supports ongoing participation in cervical screening.