Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2026
Informational needs in vulvar cancer and precursor conditions: a social listening study.
СтатьяНазвание и аннотация: Перевод в очереди
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Wouters D, van Lynden van Sandenburg M V G L, Hulscher K K, van Esch E M G, Aarts J W M
Аннотация
PURPOSE: 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.
METHODS: 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.
RESULTS: 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.
CONCLUSION: 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.
METHODS: 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.
RESULTS: 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.
CONCLUSION: 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.