The course of lichen sclerosus diagnosed prior to puberty.

Study Objective: To help determine the long-term course of girls diagnosed with lichen sclerosus before puberty.

Design: Retrospective chart review and follow-up interview.

Setting: Washington University pediatric gynecology and dermatology clinics.

Participants: Premenarchal girls diagnosed with lichen sclerosus from 1989-2010.

Interventions: Telephone interview.

Main Outcome Measures: Resolution of symptoms, specifically pain and/or pruritus.

Results: Follow-up was available for 36 premenarchal girls. The mean age at lichen sclerosus (LS) diagnosis was 7 years (range: 3-14 years). The mean duration of follow-up was 5.3 years (range: 2 months-15 years). Treatment with topical steroids (primarily 0.05% clobetasol propionate ointment) resulted in improvement in symptoms within an average of 14 weeks (range: 2 weeks-2 years) in 33 girls. Eighty-three percent of patients (n = 30) experienced remission after initial treatment. Sixteen patients reported relapses requiring an average of 3.1 years of intermittent maintenance therapy. The mean length of remission to date was 3.6 years (range 1 months-10 years). 72% of patients reported remission at the time of the phone interview. Of note, 7 out of 9 patients in our study who continue to report symptoms are still premenarchal. One postmenarchal patient was asymptomatic but had signs of LS on physical exam.

Conclusion: The prognosis and long term course of LS diagnosed prior to puberty is unclear. Although remission may occur prior to menarche in some cases, once children reach menarche with active disease, complete remission may be less likely. Treatment duration of LS in our study had a wide range, but 3 months appears to be adequate for most patients to obtain remission.