Vulval lichen sclerosus in primary care: how common is it and how can we support patients?

Problem

Vulval lichen sclerosus (VLS) is a chronic dermatological disease causing symptoms such as intense pruritus, pain, and dyspareunia. If untreated, VLS can lead to malignancy, scarring, and anatomical changes irreversible without surgery. People with vulval disease are an under-researched population, and prevalence in primary care is unknown. This study aimed to understand the experience of living with VLS, including of help-seeking in primary care, and to examine the prevalence of VLS in primary care.

Approach

We are undertaking a mixed methods study. We utilised in-depth interviews with women (n=20) recruited through support groups and social media, and a survey of primary care patients (n=106 at time of abstract). Qualitative analysis was informed by grounded theory. The survey is a work-in-progress, with a descriptive analysis to be undertaken in Spring 2023. This mixed methods approach enabled us to gain rich data about the experiences of living with VLS, and to then explore this in a broader population recruited through primary care. The survey also generated data about rates of VLS in primary care sites.

Findings

Interviewees reported long delays to diagnosis, despite presenting to primary care on multiple occasions. Supportive primary care clinicians provided referral and took symptoms seriously. VLS was often misdiagnosed as candidiasis or genitourinary symptoms of menopause. Patients may struggle to accurately describe their symptoms given poor public understanding of vulvovaginal anatomy. Analysis of survey data is ongoing, but preliminary analyses suggest that survey respondents may be more positive about their experience of diagnosis and treatment, indicating that those using support groups have experienced greater challenges in accessing diagnosis and treatment, resulting in the need for more support. Preliminary data indicates that between 0.28-1.08% of practice populations (n=19 practices) were coded as having a VLS diagnosis.

Consequences

Primary care clinicians, including GPs and practice nurses, have a critical role in the lives of those with vulval symptoms. Patients feel supported by primary care clinicians when they take symptoms seriously, examine patients, and refer to secondary care when unsure of diagnosis or treatment. We recommend that practice staff, especially GPs and nurses, are made aware of the impact of VLS on quality of life, and that repeated presentations for vulval symptoms should trigger the need for examination and consideration of a diagnosis of VLS or other vulval disease. Vulval symptoms can be highly distressing, and it is important that presenting patients feel they have been listened to. Persistent vulval symptoms should not be accepted as part of ageing, rather they should be fully investigated to alleviate suffering and prevent long-term irreversible changes to the vulval anatomy. Further research is needed to understand the impact of this neglected condition and the experiences of primary care clinicians in managing this population.