P044 Introducing lichensclerosusguide.org.uk: a comprehensive web-based resource for people with vulval lichen sclerosus

Abstract Vulval lichen sclerosus (VLS) has a significant impact on quality of life. Currently available patient information is limited in scope, inconsistent, and from some sources unreliable. Patients with VLS report conflicting advice from health professionals, which contributes to the distress and anxiety that often accompany this diagnosis. (Arnold S, Fernando S, Rees S. Living with vulval lichen sclerosus: a qualitative interview study. Br J Dermatol 2022; 187: 909–18). Educating patients can empower them to feel in control of their condition and support self-management. Recent studies have shown that there are multifactorial barriers to diagnosis and treatment and a need for comprehensive and reliable information for women diagnosed with VLS (Crew A, Leatherland R, Clarke L et al. Barriers to diagnosing and treating vulval lichen sclerosus: a survey study. Br J Gen Pract 2025; 75: e250–6). The aim of this study was to develop a comprehensive, reliable, web-based information resource for VLS. The project was funded through awards from the British Association of Dermatologists (Consultant Sabbatical Fellowship and the Special Interest Group Project Support Fund) and educational grants from the British Society for the Study of Vulval Disease and Wellbeing of Women. A steering group, involving clinical and patient experts, oversaw the project. A survey of a large patient support group was undertaken to identify areas for inclusion. A creative content company was selected, following a tender process, to develop material into web-based form including graphics and animations. Content was cocreated by steering group members who reviewed the literature to ensure evidence-based and up-to-date information was being presented. Weekly project lead meetings plus monthly steering group meetings occurred. Input from a copywriter enabled consistency in terms of tone and ‘voice’ of content. Responses from 607 patients were received from the survey. A predefined list was created of 15 information topics that were ranked for inclusion, and 9 additional topic areas were added following patient feedback. Short animations were developed to support four key areas ‘Vulval anatomy’, ‘What is vulval lichen sclerosus’, ‘How to apply topical steroids’ and ‘How to check your vulva’. A downloadable symptom checklist and treatment plan to facilitate diagnosis and management are included. The resource will be edited regularly to ensure the advice is up to date. For inclusivity, key elements of the guide will be translated into the languages most spoken in the UK, or those spoken by the most deprived populations. A social media strategy, starting on World Lichen Sclerosus Awareness Day, has been developed to ensure effective dissemination. The guide has been included in the National Health Service England Getting It Right First Time advice and guidance templates. In summary, lichensclerosusguide.org.uk is a new resource for patients, codesigned with patients, which aims to empower those living with VLS and support self-care.