Informational Needs in Vulvar Cancer and Precursor Conditions: Social Listening Study (Preprint)

BACKGROUND Vulvar cancer and its precursor conditions, such as vulvar intraepithelial neoplasia (VIN), are rare but impose substantial physical, psychological, and social burden. Stigma and taboo surrounding vulvar health hinder symptom disclosure and timely help-seeking, contributing to diagnostic delays averaging 6-11 months. Patient information plays a key role in reducing this burden, yet existing research on informational needs has predominantly focused on women already within clinical care pathways. OBJECTIVE This study aimed to identify population-level knowledge gaps and unmet informational needs related to vulvar cancer and its precursors through systematic analysis of user-generated online questions, a population largely inaccessible to clinic-based research. METHODS A social listening design was employed. Questions were collected from six publicly accessible online platforms in the Netherlands, United Kingdom, and United States between November 2025 and January 2026, encompassing posts from platform earliest 2008 through the collection period. Posts were included if they contained a question related to vulvar cancer or its precursors. Following screening, 619 questions were included. Data were analyzed using descriptive thematic analysis; a second researcher independently coded the dataset. Descriptive frequency analysis illustrated the relative prominence of themes. Recommendations were formulated to instruct patient information provision. RESULTS Seven themes were identified: causes, early signs, diagnostics, treatments, after treatment, long-term, and psychosocial impact. Early signs (19%) and after treatment (19%) accounted for the largest proportions of coded segments, followed by diagnostics (17%). Within early signs, symptom recognition dominated (81% of theme codes), constituting the most frequently expressed informational need. After treatment questions mostly concerned post-operative wound complications and recovery expectations, including among pre-operative women. Diagnostics questions centered on result interpretation and vulvar intraepithelial neoplasia terminology. Themes mapped onto a six-phase patient journey framework indicated that informational needs were recurred across the disease trajectory. CONCLUSIONS Recognition uncertainty—the persistent difficulty interpreting vulvar bodily changes—is the central informational need across the vulvar cancer and vulvar intraepithelial neoplasia patient journey, from pre-diagnostic symptom appraisal through survivorship. Phase-integrated patient education holds potential to reduce diagnostic delays, support recovery, and alleviate psychological burden. CLINICALTRIAL N/A