The aim of the study was to determine outcome measures that women with vulvar lichen sclerosus (LS) rate as important in assessing disease severity with the ultimate goal of including these items in a disease severity rating tool.
An online survey of women older than 18 years with a diagnosis of vulvar LS was performed. The survey was posted in Facebook LS support groups. Participants rated items on a scale from 1 to 5 (not important to include to essential to include) in a disease severity scale. Participants also rated how often they were affected by various symptoms on a scale from 1 to 5 (never to daily). Mean rating of importance and mean rating of frequency for each sign and symptom were calculated. T tests were used to compare patients with biopsy-proven disease with those with a clinical diagnosis of LS.
Nine hundred fifty-eight participants completed the survey (86% completion rate). Patients felt that the most important items to assess disease severity were irritation (4.39), fusion of the labia (4.38), soreness (4.37), itch (4.34), change in vulvar skin (4.34), and decrease in quality of life (4.33). The most frequently experienced items by those with LS were irritation (3.92), changes in appearance of vulvar skin (3.92), and discomfort (3.89). There were no differences between patients with biopsy-proven LS versus those diagnosed on clinical examination.
Future LS severity assessment tools will need to include a combination of patient-rated symptoms, clinical rated signs and anatomical changes, and quality of life measures.