Co-production of a conversation guide for HPV-based cervical cancer screening results communication

Cervical cancer screening reduces cancer morbidity and mortality, but ineffective communication of test results and inadequate follow-up undermines these benefits. Variable knowledge about human papillomavirus (HPV), and the stigma, anxiety, and confusion associated with sexual transmission of HPV complicate communication about results. Our objective was to adapt and integrate evidence-based messages into a conversation guide to help clinicians discuss HPV-based cervical cancer screening results with patients.

Iterative co-production process included patient engagement panels, semi-structured individual interviews with healthcare system users, preceded by an online questionnaire, and clinician engagement. Interview participants (n = 21) were female healthcare system users aged 21-65, with a cervical cancer screening test in the past 5 years. We consulted with a patient engagement panel to develop the study design and provide feedback on results. We invited interview participants to complete a questionnaire rating the helpfulness of 13 evidence-based messages, followed by a qualitative interview to better understand responses to the messages. Using results from rapid qualitative analysis, we refined messages and incorporated them into a draft conversation guide, reviewed with the patient engagement panel and women's health clinicians, and revised.

Principal recommendations for conversations about test results were: (1) Recognize and respond to patient fear and anxiety, particularly fear of cancer; (2) Empower patients to navigate next steps in the screening continuum; and (3) Avoid using a sexually transmitted infection (STI) framework for HPV, which may focus patient reactions and concerns unhelpfully. Based on these recommendations, the conversation guide includes five primary messages, frequently asked questions with responses tailored to individual situations, and guidance for offering personalized follow-up instructions.

Engaging with stakeholders and integrating end-user perspectives throughout the design process may lead to an increased ability to fulfill users' needs.

As HPV-testing becomes the primary modality for cervical cancer screening, a conversation guide may help facilitate more effective communication about screening results.