Sally B. Rose

‘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

BackgroundHuman papillomavirus (HPV) testing became the primary cervical screening modality in Aotearoa New Zealand in September 2023. To inform the national roll‐out of HPV primary screening, a multiregion implementation study (‘Let's Test for HPV’) was undertaken in primary care in 2022–2023.AimsTo explore participant perspectives and information needs following receipt of an HPV detected result.Materials and methodsAn online survey completed in 2023 by 921 Let's Test for HPV participants included 95 people with an HPV detected result (10.3%). Data collection included: adequacy of information provision, receipt of results, emotional response, views on HPV primary screening and needing cervical cytology and/or colposcopy, and intent to screen again.ResultsReceipt of an HPV detected result was worrying for most people and many had unanswered questions about HPV, how HPV testing fits with cytology, implications for follow‐up and outcomes. Knowledge gaps and uncertainty appeared to be linked with feeling anxious about possible outcomes and fear of a cancer diagnosis. All survey participants received recommended follow‐up (cytology and/or colposcopy). Having a choice of screening test and the ability to self‐test were welcomed and the majority (88%) expressed intent to screen again.ConclusionsThese survey findings highlight the importance of giving clear information about potential outcomes at the time of screening and again when sharing results. Sensitive delivery of results, providing reassurance and answering questions are also important to mitigate fear and worry. Population‐level education would help improve understanding of key messages about HPV testing and the changes to cervical screening.

‘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.

Experience of HPV primary screening: a cross-sectional survey of ‘Let’s test for HPV’ study participants in Aotearoa New Zealand

Introduction 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. Aim This study aimed to describe ‘Let’s test for HPV study participants’ experiences with HPV primary screening. Method 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. Results 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%). Discussion 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.