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

Abstract

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.