'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.

Abstract

Background: Human 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.

Aims: To explore participant perspectives and information needs following receipt of an HPV detected result.

Materials and methods: An 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.

Results: Receipt 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.

Conclusions: These 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.