Lichen Sclerosus: A Survey of Diagnosis and Management Among Pediatric Dermatologists and Gynecologists

June 2024 | Volume 23 | Issue 6 | 450 | Copyright © June 2024


Published online May 28, 2024

doi:10.36849/JDD.8084

Christine M. Pennesi MDa, Aneka Khilnani MSb, Kalyani S. Marathe MDc, Tazim Dowlut-McElroy MDd, Kaiane Habeshian MDd

aCincinnati Children’s Hospital Medical Center, Division of Pediatric and Adolescent Gynecology, Cincinnati, OH; and University of Cincinnati, Department of Obstetrics and Gynecology, Cincinnati, OH
bGeorge Washington University School of Medicine and Health Sciences, Washington, DC
cCincinnati Children’s Hospital Medical Center, Division of Dermatology, Cincinnati, OH
dPediatric and Adolescent Gynecology, Department of Surgery, Children’s Mercy Hospital, Kansas City, MO
eChildren's National, Division of Dermatology, Washington, DC; and George Washington University School of Medicine and Health Sciences, Washington, DC

Abstract
Background/Objectives: Lichen sclerosus (LS) is a chronic condition that warrants close follow-up due to the risk of scarring. The optimal long-term management of pediatric vulvar and perianal lichen sclerosus (PVPLS) is unknown. This study aimed to identify diagnostic, treatment, and maintenance regimens among pediatric dermatologists and pediatric/adolescent gynecologists, as well as assess provider confidence and desire for guidance on long-term PVPLS management.
Methods: A cross-sectional 35-question survey was administered through the Pediatric Dermatology Research Alliance (PeDRA) and the North American Society for Pediatric and Adolescent Gynecology (NASPAG) between 7/13/2021 and 8/30/2021 to ascertain PVPLS diagnostic and management regimens.
Results: Most responders were attending-level pediatric/adolescent gynecologists (46%) and pediatric dermatologists (41%). Although 85% of participants felt completely or very confident in diagnosing PVPLS, the majority (86%) desired further management guidelines. While the initial treatment was similar among providers, maintenance regimens and follow-up varied considerably, with only 42% recommending lifelong monitoring despite potential persistence into adulthood.
Conclusions: While initial treatment was similar among practitioners, there was variation by specialty in subsequent management and a lack of uniformity in long-term follow-up. Additional studies are needed to clarify the optimal management of PVPLS and to provide evidence-based guidelines regarding long-term follow-up. 

J Drugs Dermatol. 2024;23(6):450-455.     doi:10.36849/JDD.8084

INTRODUCTION

Lichen sclerosus (LS) is a chronic inflammatory disease with a bimodal age of diagnosis in prepubertal girls and post-menopausal women.1 The symptoms of LS can mimic other conditions and lead to a delay in accurate diagnosis.2 Providers often refer to data on adult-onset LS when counseling pediatric patients due to the paucity of literature about pediatric LS.1,2 Long-term risks of PVPLS including the prevalence of persistent disease into adulthood as well as associated complications such as dyspareunia, obstetric challenges, and vulvar squamous cell carcinoma are unknown.3-7 

The 2018 British Association of Dermatologists guidelines recommend clobetasol ointment as first-line treatment with a three-month taper.8 Despite an acknowledgment of the need for maintenance therapy and long-term follow-up,4 the lack of evidence precluded clear guidelines after initial therapy. This survey study aimed to identify variations in methods of diagnosis, treatment regimens, and long-term management of PVPLS amongst pediatric dermatologists and pediatric/adolescent gynecologists. Given the lack of long-term management guidelines, we hypothesized there would be significant variability among providers.

MATERIALS AND METHODS

We conducted an IRB-exempt cross-sectional online survey study using REDCap. The 35-question survey was first pilot-tested by two pediatric dermatologists, two pediatric/adolescent gynecologists, one medical student, and one research coordinator and then distributed via PeDRA with no reminders and NASPAG with two reminders between July 13, 2021 and August 30, 2021. 

The survey queried provider demographics including years in practice and volume of patients with PVPLS, comfort level with diagnosis, preferences for initial and subsequent management, preferences regarding long-term follow-up, and familiarity with available guidelines for care. 
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