Barriers to diagnosing and treating vulval lichen sclerosus: a survey study

Vulval lichen sclerosus (VLS) is a chronic inflammatory condition that is frequently misdiagnosed and under-recognised. To date, qualitative research has focused on lived experience of VLS, with women attributing diagnostic delay to poor interactions with healthcare professionals (HCPs), often due to lack of knowledge. In the UK, women with VLS are most likely to present to primary care.

To establish HCPs' perspectives on the identification, management, and education of vulval skin disease, with a focus on VLS.

A mixed-methods study survey undertaken across the UK.

HCPs were recruited through opportunistic sampling. The survey was distributed via email and WhatsApp through professional networks and in hard-copy format at events, and completed between 1 November 2023 and 14 December 2023. Data were analysed using descriptive statistics, Spearman's rank correlations, and thematic analysis.

Of 122 responders, most were GPs (n = 53) and GP trainees (n = 59). In total, 37.7% of responders had never participated in teaching or learning on vulval skin disease. Confidence in the identification of vulval skin disease positively correlated with experience, exposure, and female gender, although this last correlation was weak. The top identified barriers to diagnosis and treatment included lack of knowledge, embarrassment, and absence of VLS diagnostic criteria. Almost all participants (97.5%) felt that VLS diagnostic criteria would be helpful in clinical practice.

This study provides insight into the barriers to diagnosing and treating VLS in primary care. HCPs recognise deficiencies in training and referral pathways, and a lack of tools to support VLS diagnosis. Training should include skills to address stigma and embarrassment. This study highlights the importance of developing interventions, such as reproducible diagnostic criteria, to overcome barriers, thereby expediting diagnosis and treatment.