Expert-Led Virtual Support for Vulvar Lichen Sclerosus: A Randomized Controlled Trial

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Background: Vulvar lichen sclerosus (VLS) is a chronic inflammatory condition that significantly impacts quality of life (QOL). Despite substantial disease burden, psychosocial support remains limited. In particular, available resources are limited to social media groups, which may lack evidence-based guidelines or structured support. Objective: To evaluate whether participation in a dermatologist- and urogynecologist-led virtual support group improves QOL among women with VLS. Methods: In this randomized controlled trial of women aged ≥18 years with VLS, the intervention comprised 3 monthly, 60 minute virtual support sessions facilitated jointly by a dermatologist and urogynecologist. The primary outcome was change in Vulvar Quality of Life Index (VQLI) scores assessed at baseline and 3 monthly follow-ups, analyzed using mixed-effects linear regression. Secondary outcomes included VQLI domain scores, and qualitative feedback analyzed using inductive thematic analysis. Results: Sixty-eight participants (35 intervention, 33 control) were included. The intervention group demonstrated a significantly greater improvement in total VQLI from baseline to final follow-up compared to control (β = −10.3, 95% CI −14.9 to −5.6; P < .001), and a corresponding shift from Moderate to Mild severity range of impact on QOL. Significant improvements in baseline to follow-up scores were also seen across all 6 VQLI domains in the intervention group compared to the control group. Qualitative themes highlighted that expert facilitation helped empower patients and addressed the need for knowledge sharing. Conclusion: Expert-led virtual support groups may offer a potentially impactful, accessible, and scalable adjunct to medical therapy.