Testing positive for Human Papillomavirus (HPV) at primary HPV cervical screening: A qualitative exploration of women’s information needs and preferences for communication of results

Abstract

Human Papillomavirus (HPV) primary cervical screening was implemented across England during 2019, where cervical cell samples are first tested for HPV and cytology is used to triage HPV-positive results. Around 8.5% of women who attend test HPV-positive with normal cytology (HPV+/normal). We aimed to explore women’s information needs and suggestions for improvements to result communication following an HPV+/normal result, among those with higher and lower levels of education. In‐depth interviews were conducted with 30 women aged 24–63 who had tested HPV+/normal at routine screening. Secondary qualitative data, not previously reported, were analysed using Framework Analysis to compare themes between those with education lower-than-degree-level vs. degree-level-or-higher (n = 15 in each group). Regardless of education level, women had unanswered questions about their result meaning and the HPV primary screening protocol. Expectations of cervical screening did not always match the service provided, especially regarding content of letters and mode of result delivery. Women with lower education were less clear about the meaning of normal cytology and its link to HPV; and had difficulty sourcing information after their result. Pragmatic suggestions were made for preferences in content, wording, format, and delivery of information in patient communications. Overall, our findings point to areas which can be used by policymakers and healthcare professionals to inform content and communication of results, as HPV primary screening continues to be implemented and refined worldwide. Future research should use these suggestions to develop patient materials and then test them to assess content engagement and information recall.

Acceptability of risk stratification within population‐based cancer screening from the perspective of the general public: A mixed‐methods systematic review

“…49 The impact of inadequate communication and education on widening inequalities was of concern in our review and the reality of this has been demonstrated by cervical screening changes, as less educated women demonstrated poorer understanding, indicating that inferior communication can exacerbate existing inequalities. 50,51 Overall, this suggests that future communication of changes to cancer screening programmes should provide transparent evidence and reassurance in public communications.…”

Challenges and Needs of HPV-Positive Women

“…As with other studies, especially others, there is confusion about the source of infection, treatment, and reinfection. 17 , 20 When asked about related questions such as throat and rectal cancer and partner anxiety, women see HPV as more than just a cause of cervical cancer. Therefore, to reassure these women and meet the needs of these individuals, health care providers should consider appropriate counseling strategies.…”

A clinician’s dilemma: what should be communicated to women with oncogenic genital HPV and their partners regarding the risk of oral viral transmission?

“…Even the mere positivity of a HPV test, often leads to stigmatization of the woman and blaming of the female sexual partner, or causes detrimental effects in the emotional aspects of sexual relationships. Moreover, the degree of understanding of the meaning of an HPV test result and of the related practical implications may be scarcely predictable, as successful communication is influenced also by individual education levels [ 48 ].…”