Barriers to vulvar lichen sclerosus care persist

Barriers to vulvar lichen sclerosus care persist | Image Credit: © DragonImages - © DragonImages - stock.adobe.com.

Barriers continue to limit access to timely, specialized vulvar care among US patients, according to a recent study published in O&G Open.¹

Despite significant morbidity associated with vulvar lichen sclerosus (LS), diagnosis is often delayed by 5 to 15 years. Approximately 22 per 100,000 individuals are impacted by this condition per year, risking exacerbating disease and cancer because of these delays. Restrictions may include clinician shortages, long wait times, and insurance restrictions.

“Moreover, continuity of care is crucial for managing vulvar LS, yet clinics with wait times exceeding 1 month are less likely to provide it,” wrote investigators.

Assessing diagnosis of vulvar LS

The study was conducted to assess new-patient wait times, geographic disparities, and insurance acceptance across vulvar specialty clinics in the United States. These clinics provide diagnostic and treatment services to patients with vulvar LS.

Clinics were identified from the Society for the Study of Vulvovaginal Disease and Lichen Sclerosus Support Network clinician lists and contacted by 1 of 2 researchers. These researchers recorded earliest available new-patient appointment days across these locations.

Analyses of wait times were performed based on location, insurance, and clinic features. Investigators analyzed data in SPSS v29.020.

There were 246 clinics contacted for the study, 67.1% of which were accepting new patients. Of clinics, 85.5% were gynecology clinics while 14.5% were dermatology clinics. Additionally, while most accepted commercial insurance and Medicaid, 8.5% accepted cash payment only. New-patient appointment fees ranged from $275 to $1880, with an average of $860.

Wait times and referral requirements

When including all clinics, a median wait time of 55 days was reported. However, this time was significantly reduced in cash-pay clinics, at 15 days vs 63.5 for those accepting commercial insurance. Referral was required for all patients in 24.8% of clinics.

Being affiliated with academic centers was reported by 38.8% of clinics, with a longer median wait time of 85 days reported in academic medical centers. In comparison, the media wait time was 44 days in nonacademic and private clinics.

Investigators highlighted that 20.7% of clinics were closed or had a retired clinician. Additionally, 7.3% reported not accepting new patients and 4.9% not treating vulvar LS. Overall, the data highlighted barriers to timely, specialized care from US vulvar specialty clinics, alongside substantial geographic disparities such as 13 states lacking clinicians.

“Improved clinician and trainee education and interdisciplinary collaboration are vital to reducing financial and geographic obstacles, decreasing morbidity, enhancing patient outcomes, and increasing equitable care,” wrote investigators.

Clinical outlook and patient guidance

According to Mayo Clinic, the odds of LS are increased among postmenopausal women.² Medicated ointment has been proven effective for returning the skin to its usual color and reducing the risk of scarring among patients, but high recurrence risks highlight a need for long-term follow-up care.

Mayo Clinic also recommends patients see a health care provider once symptoms appear. These may include discolored or blotchy skin, itching, soreness or burning, easy bruising, fragile skin, changes in the urethra, bleeding or open sores, and painful sex. Patients with an LS diagnosis should undergo follow-up visits every 6 to 12 months to assess possible skin changes.

References

1. McAleer L, Powers CM, Abraham O, Rixera Dixon S, Mauskar M. Barriers to care for vulvar lichen sclerosus: An analysis of US specialty clinic access. O&G Open. 2025;2(4). doi:10.1097/og9.0000000000000099
2. Lichen sclerosus. Mayo Clinic. Accessed August 08, 2025. https://www.mayoclinic.org/diseases-conditions/lichen-sclerosus/symptoms-causes/syc-20374448.