Living with vulval lichen sclerosus: A mixed methods study

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.

Potential non-academic beneficiaries of this research include women with vulval lichen sclerosus (LS), healthcare professionals treating people with the condition, and the British Association of Dermatologists Guideline Development Group who review and update the guidelines for the management of LS. This study will improve life for vulval LS patients by bringing attention to the condition and to their experience of it, and that healthcare professionals will gain a greater understanding which will in turn benefit patients. This study will also explore and map the current pathways to diagnosis and treatment in the NHS for vulval LS sufferers. Knowledge of this will be used to improve provision and access to care, which will benefit people with vulval LS.

I will undertake activities which will use the findings to raise awareness of LS, and this will help women feel less isolated and stigmatised. Healthcare professionals will also benefit from a greater understanding of the disease experience. The study will go beyond existing literature on impact on quality of life, which has generally used quantitative measures to evaluate impact on the domain of sexual functioning. This will benefit healthcare professionals by providing a more rounded and nuanced understanding of the impact, which will inform their consultations with patients, making them more sensitive to the particular issues which patients may be dealing with, and better able to counsel patients. This improvement in healthcare professionals' knowledge and understanding will in turn benefit patients. If a patient feels that a healthcare professional does not understand their perspective about, for example, using steroid ointment, they may feel dissatisfied and even distressed by their encounters with them. But if doctors have a greater understanding of the patient perspective, then they will mutually benefit from an improved relationship.