Vulval lichen sclerosus in UK general practice: A cross-sectional survey of patient experience

Objective: To explore experience and prevalence of vulval lichen sclerosus (VLS) diagnosis in general practice using an anonymous patient survey. 

Design: Quantitative descriptive cross-sectional survey informed by previous qualitative interviews and developed with patient representatives, sent to people recorded in general practice as having a VLS diagnosis. 

Setting: General practices (n=24) in the UK (West Midlands). 

Participants: n=177 respondents. 

Results: One in five respondents reported that they had been misdiagnosed, and about a third reported that it was a struggle to get treatment. Only one third said they received regular check-ups, recommended in clinical guidelines. One-fifth reported they were not being treated with topical corticosteroids, the main first-line treatment for VLS. Less than one in 10 were members of a support group, and around four in 10 felt they had to hide their condition and did not speak to anyone else about it. Survey respondents prioritised improving education and awareness among healthcare professionals (HCPs). 

Conclusion: General practitioners and other primary care HCPs have a key role in recognising, diagnosing and managing VLS. Improving education and awareness among HCPs was a key priority for this patient group. Patients should be made aware of the need for ongoing treatment and yearly check-ups to prevent or manage disease progression. VLS is a highly stigmatised condition, and appointments with HCPs may be the only opportunity for people to talk about their experience.