'Why Didn't I Get That Choice?': A Qualitative Exploration of How Cervical Screening Choices Are Understood and Experienced by Screen-Eligible People in Australia, Two Years After Self-Collection Became an Option for All

“为什么我没有选择权?”:一项关于澳大利亚符合筛查条件的人群在自取样成为全民选项两年后如何理解和体验宫颈癌筛查选择的定性研究

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Abstract

BACKGROUND: Australia's human papillomavirus (HPV)-based National Cervical Screening Program guidelines state that anyone eligible for screening should be offered a choice of using self-collection or clinician collection for initial screening. AIM: To explore the awareness and experiences of women and people with a cervix who have been screened since this choice became available in July 2022. METHODS: Semi-structured online or telephone interviews were conducted between February and May 2024 with 43 Victorian women and people with a cervix, aged 25-74 years. All participants self-reported completing a cervical screen within 12 months of our study. Interview data were recorded, transcribed verbatim and thematically analysed before being mapped to The Ottawa Decision Support Framework. Self-reported screening history was confirmed with de-identified data from the National Cancer Screening Register (NCSR) Victorian Raw Data Extract (November 2024). RESULTS: Fewer than half (19, 44%) of those interviewed were given a choice at their most recent screen, with variation in how options were presented by healthcare providers. Participants felt they lacked awareness and knowledge to feel confident in their options. Most participants viewed having a choice as important and, even if they did not prefer self-collection for themselves, noted benefits for others. Some felt disappointed or angry about not having a choice, while others were happy to defer to their doctor. Relationships with, and the views of, healthcare providers strongly influenced decision-making. Participants reflected on potential advantages of self-collection if it could reduce the cost of appointments and be accessed in more flexible ways. Among the 38 participants who consented to screening history verification, the self-reported data showed reasonable accuracy (67%) against the NCSR. CONCLUSION: Despite a clear policy directive for practitioners to offer a choice to all eligible individuals, many recent screeners were not offered the choice or lacked the knowledge, confidence and decision supports needed to make an informed choice. The choice of screening method appears strongly influenced by if, and how, options are presented by healthcare providers. A range of strategies are needed to ensure screeners feel empowered, supported and informed to make and carry out a real choice. PATIENT OR PUBLIC CONTRIBUTION: Members of the public were involved in interviews. Findings were summarised and disseminated via a short report. A consumer advisory panel provided feedback on the content, readability and length of all patient-facing resources.

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