PA18 Addressing the comprehensive care needs of paediatric patients with vulval lichen sclerosus

Abstract Vulval lichen sclerosus (VLS) is a chronic inflammatory condition of unknown aetiology. Around 5–15% of cases are diagnosed in prepubertal girls, and so this condition is frequently encountered in the paediatric dermatology clinic setting. It was once thought that juvenile VLS (JVLS) abates by puberty, but this has since been disproven (Heymann WR. Juvenile lichen sclerosus: a loss of innocence. J Am Acad Dermatol 2020; 82: 301–2). There is a lack of studies reviewing the impact of this condition on children and adolescents. The aims of our study were to examine the impact of this condition on the lives of adults who were diagnosed with VLS in childhood and to improve our service to support adolescents with this condition. In total 17 patients aged > 18 years who were diagnosed with JVLS in childhood over a 10-year period between 2005 and 2015 were invited to partake in a survey. Five completed surveys were returned. All five patients were diagnosed with JVLS at < 10 years of age, with itch and painful urination being the most common presenting symptoms. Three patients with ongoing symptoms of VLS reported performing self-examination infrequently and they reported that they did not feel confident in doing so. Four patients reported that this condition did not impact on their quality of life, but it impacted on the sexual function of three patients and the self-image of two patients. All five patients did not receive or were unsure whether their parents or guardians received age-appropriate information about VLS prior to becoming sexually active and were not made aware of the long-term consequences of VLS. The provision of age-appropriate information on the diagnosis, management and sequelae of VLS were emphasized as ways in which we could improve our service for this group of patients. This study highlighted areas in which we, as clinicians, could more effectively treat and support this subgroup of patients. As a result, we have produced a poster, infographic sheet and patient information leaflet tailored for adolescents with VLS, which focuses on areas such as the anatomy of the vulva, the impact of VLS on sexual function and self-examination technique. The documents created were reviewed by one of our survey respondents for feedback. We hope that the leaflets will enable our patients to feel empowered to manage and live with VLS.