Monitoring

Review patients with anogenital lichen sclerosus (LS), with or without extragenital LS, initially every 1 to 6 months until the condition has stabilized. Once stable, review every 6 to 12 months to ensure disease control and to evaluate for malignant transformation.​[56][84]​ When symptom control has been achieved in patients with only extragenital disease, give advice to self-monitor for the development of anogenital disease.

Closely inspect the skin for texture or color change; any evidence of this should prompt consideration of flares of LS or signs of development of differentiated vulvar intraepithelial neoplasia (dVIN) - a precursor for squamous cell carcinoma (SCC). Particularly look for any nonhealing hyperkeratotic areas, erosions, or firm papules/nodules, which should be considered suspicious for dVIN. If lesions persist despite therapy or progress, biopsy is indicated.

  • Bear in mind that there is a risk of neoplastic change (occurs in approximately 5% of women with anogenital LS).[84]

  • Risk can be minimized by good disease control. One longitudinal cohort study of 507 women with vulvar LS found a significant difference in the number of cases of SCC in the 357 treatment-compliant patients who attended regular follow-up (0 cases) versus 7 cases of SCC in the non-compliant/partially compliant patients.[84]

As LS is known to be associated with autoimmune diseases, some experts recommend screening for associated autoimmune diseases: for example, with an autoantibody screen and assessment of thyroid status.[56]

Studies have shown that LS in children may have a more chronic course than previously thought.​[90][106]

  • One observational retrospective study of 31 premenarchal girls diagnosed with LS who were followed up for clinical evaluation following menarche found that 58% still had symptomatic disease and a further 26% had persistent clinical signs of LS despite being asymptomatic.[90]

  • These findings suggest the importance of long-term follow-up, even among patients who report resolution of symptoms following menarche; therefore, pediatric patients should also be monitored and maintenance therapy considered in select populations depending on disease control and severity.[90]

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