Long-term Management of Stable Vulvar Lichen Sclerosus: A Scoping Review of Models of Care.

OBJECTIVE

This scoping review aimed to examine the existing literature on the long-term management of stable vulvar lichen sclerosus (VLS), with a focus on care settings, provider roles for long-term management of uncomplicated disease, and to identify gaps within these frameworks.

METHODS

PubMed, Embase, and Web of Science were searched from inception to August 2025. Eligible sources included original research studies, audits, surveys, clinical practice guidelines, and consensus statements published in English with full-text availability. Studies involving adult women with VLS that addressed models of care, follow-up or surveillance, and long-term management were included. Studies focusing exclusively on pediatric populations, nonvulvar lichen sclerosus, commentary-only articles, or management of high-risk or complicated disease (including prior vulvar neoplasia) were excluded. Relevant professional society guidelines and consensus documents not captured through database searching were identified through targeted grey literature review.

RESULTS

Thirty-two sources of evidence met the inclusion criteria. The literature was heterogeneous, comprising observational studies, audits, surveys, and national and international consensus guidelines. There was broad agreement regarding the principles of lifelong follow-up. Common barriers in implementation included missed follow-up, inadequate examination, unclear discharge and referral pathways, lack of diagnostic criteria, and limited patient and clinician knowledge. No studies evaluating long-term models of care were identified.

CONCLUSIONS

This scoping review identified limited empirical evidence describing implemented models of care for the long-term management of stable, uncomplicated VLS. While there is broad agreement across guidelines regarding principles of lifelong follow-up, multiple studies consistently demonstrate gaps between recommended models of care and implemented practice.