Abstract
Objectives:
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).
Methods:
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.
Results:
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.
Conclusion:
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.