Why do some patients with vulval lichen sclerosus on long‐term topical corticosteroid treatment experience ongoing poor quality of life?

OBJECTIVE: To identify reasons for ongoing poor quality of life (pQOL) in a subset of long‐term topical corticosteroid‐treated vulval lichen sclerosus (VLS) patients. METHODS: A prospective cross‐sectional study of patients attending a dermato‐gynaecology practice in Sydney, Australia, comparing VLS patients with good quality of life (gQOL) and pQOL, in pre‐treatment and long‐term treatment groups, using the Vulval Quality of Life Index (VQLI). Demographics, VQLI scores and treatment characteristics were compared between gQOL and pQOL patients. RESULTS: A total of 255 biopsy‐proven VLS patients, 67 in pre‐treatment and 188 in long‐term treated groups were considered. There were 33 (49.3%) pQOL patients in pre‐treatment and 13 (6.9%) in treatment groups (p < 0.001). The highest‐scoring domain in treated pQOL patients was sexuality (1.7 [interquartile range (IQR) 1.0–2.0]), followed by anxiety [1.3 (IQR 1.0–1.5]), symptoms (1.0 [IQR 0.5–1.5]) and activities of daily living (0.7 [IQR 0.3–1.0]). Compared to treated gQOL, treated pQOL had significantly higher proportions of patients with partial treatment adherence (8 [61.5%] vs 42 [24.0%], p = 0.006), suboptimal disease control (7 [53.8%] vs 20 [11.4%], p < 0.001), scarring progression (3 [23.1%] vs 7 [4.0%], p = 0.024) and urinary incontinence (5 [38.5%] vs 27 [15.4%], p = 0.049). CONCLUSIONS: Only a minority of long‐term treated VLS patients reported ongoing pQOL. Of those who did, sexuality and anxiety domains were found to be the main sources of distress. Three major areas distinguishing gQOL from pQOL patients were (1) treatment adherence and disease control, (2) psychological factors and (3) urinary incontinence.