Living With Vulval Lichen Sclerosus: General Practice Survey, 2022-2023

This data collection contains anonymised results from a UK primary care patient survey on experiences of vulval lichen sclerosus (VLS) diagnosis and management.

The survey, developed from prior qualitative interviews and with patient representatives, was sent via 24 general practices in the West Midlands to people recorded as having a VLS diagnosis (n=177 respondents). It captures patient-reported diagnostic pathways (including misdiagnosis), access to and continuity of treatment, receipt of recommended first-line therapy (topical corticosteroids), follow-up and monitoring (including guideline-recommended check-ups), use of peer support, and the social impact and stigma associated with VLS.

Findings highlight gaps in care: around one in five respondents reported misdiagnosis, about one-third struggled to obtain treatment, only one-third received regular check-ups, and one-fifth were not using topical corticosteroids. Few respondents reported joining support groups, and many described concealing the condition, underscoring the need for improved awareness and education among primary care healthcare professionals and clearer patient information on ongoing treatment and review.