Shared Care for Stable Vulvar Lichen Sclerosus: Results From the International SHAREd-LS Survey

To describe clinician perspectives, priorities, and concerns regarding the development of a shared care model for long-term management of stable vulvar lichen sclerosus (VLS).

A cross-sectional online survey was conducted of clinicians involved in managing VLS. Stable VLS was defined as controlled disease on maintenance topical corticosteroids, ≤5 self-managed flares per year, patient acceptance of chronic therapy, no history of neoplasia, and no vulvar biopsy within the preceding 12 months. Survey items assessed current models of long-term care, perceived need for expanded community-based follow-up, barriers to shared care, and views on the appropriateness and requirements for successful implementation. Quantitative data were analyzed descriptively, and free-text responses underwent thematic analysis. Ethics approval was obtained.

A total of 120 clinicians from 12 countries completed the survey, with 44.2% based in Australia. Respondents were predominantly gynecologists (51.3%) and dermatologists (27.7%), with most (68.1%) having more than 10 years' experience managing VLS. Overall, 85.1% supported a shared care model, with 68.4% rating it very appropriate, and 16.7% somewhat appropriate. Major barriers related to primary care included time and resource pressures, limited VLS knowledge, and inconsistent genital examination. Barriers identified in the specialist setting included patient preference for specialist-led care, concerns about the ability of other providers to titrate topical steroids, difficulty re-accessing specialist-led care, and communication or documentation gaps.

Vulvar specialists internationally support shared care for stable VLS, yet formal models remain rare. The barriers are largely structural and modifiable, underscoring the need for operationalized shared care frameworks.