Informational needs in vulvar cancer and precursor conditions: a social listening study

Vulvar cancer and precursor conditions including vulvar intraepithelial neoplasia (VIN) impose substantial burden, yet patient information provision remains poorly evidenced. Stigma and taboo contribute to diagnostic delays of 6-11 months. This study used social listening to map the online information-seeking landscape of women with vulvar cancer and VIN, with the aim of informing phase-integrated supportive care strategies.

Questions were collected from six publicly accessible online platforms in the Netherlands, the UK, and the US (November 2025-January 2026), encompassing posts from 2008 onward. After screening 4859 posts, 619 questions were included. Data were analyzed using inductive qualitative content analysis with independent coding; reporting followed COREQ.

Seven themes were identified: Causes, Early signs, Diagnostics, Treatments, After treatment, Long-term concerns, and Psychosocial impact. Early signs and After treatment each accounted for 19% of coded segments, and Diagnostics for 17%. Recognition uncertainty-difficulty interpreting bodily changes as normal, abnormal, or recurrence-related-was the most frequently expressed informational need, accounting for 20% of all coded segments across the Early signs, After treatment, and Long-term concerns themes, more than any single theme. After treatment, questions predominantly concerned wound complications and recovery expectations, including among preoperative women.

This recognition uncertainty is the central unmet need across the patient journey, from pre-diagnostic symptom appraisal through survivorship. These findings support phase-integrated supportive care interventions: initiating symptom-related communication before diagnosis, structuring preoperative education around recovery and wound care, and developing visually supported materials. Proactive clinician-patient communication could reduce diagnostic delays and psychological burden.