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

Rees, Sophie (2025). Living With Vulval Lichen Sclerosus: General Practice Survey, 2022-2023. [Data Collection]. Colchester, Essex: UK Data Service. 10.5255/UKDA-SN-858175

Lichen sclerosus (LS) is a chronic skin condition which affects the skin around the genitals. This project is about vulval LS, which affects the skin around the outside of the vagina. LS causes intense itching and small painful cuts in the skin, and people with LS may feel embarrassed and alone. It can cause problems for normal activities such as going to the toilet, sitting or walking, and having sexual intercourse. LS is a lifelong condition - there is no cure. Treatment with steroid ointment usually helps reduce symptoms, but does not work for everyone. Some women may need surgery if they have a lot of scarring.

There is very little research about vulval LS. In 2018, researchers, patients, and health professionals determined the top priorities for LS research. They put 'Understanding the impact of LS on quality of life' in the top ten. In this study we will explore what it is like to have vulval LS, how people usually access diagnosis and care, and how it affects their quality of life. We will also explore the views of women with LS of issues related to future clinical trials on the topic. This is because in order to answer many of the priorities identified in 2018, clinical trials will be needed. However, we do not know whether women would take part, and what would be important to them in a clinical trial.

We will invite women with LS to take part in an interview about their experiences and views. We will give people the option of a telephone interview if they do not want to speak to a researcher face-to-face. We will invite women to focus groups to explore feelings about the current recommended treatment (putting steroid ointment on the affected area).

We will use the results from all of this to design a questionnaire for women with LS to answer. This means we will be able to ask lots of people the same questions, and that people who did not want to take part in an interview will be able to tell us about their experience. Questions will be about what areas of their life are affected by LS and how they accessed diagnosis and treatment.

We will also work with an artist to create artwork based on the research findings. At the end of the study, we will hold an event at which we display this artwork and hold a discussion between people with LS and healthcare professionals.
Four women with LS have joined a 'lay advisory group'. This group will meet several times during the research to give input into the study design, such as designing the interview questions, and helping us share the findings.

Data description (abstract)

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.

Downloads

Altmetric