Quality of Life in Vulvar Lichen Sclerosus Patients Treated With Long-Term Topical Corticosteroids

Abstract

Objective The aim of the study was to investigate the quality of life in vulvar lichen sclerosus (VLS) patients treated with long-term, individualized topical corticosteroids. Methods A prospective cross-sectional study comparing new pretreatment and long-term treated VLS patients attending a dermatogynecology practice in Sydney, Australia. Participants were invited to complete the Vulvar Quality of Life Index (VQLI). The VQLI scores were compared between the 2 groups. Results A total of 204 biopsy-proven VLS patients—68 new pretreatment and 136 treated patients on topical corticosteroids for 2 years or longer. Treated participants scored lower in all VQLI components, including total score (median = 2.0 [interquartile range {IQR} = 0.0–6.0] vs 13.5 [IQR = 7.5–22.0]; p < .001), symptoms (median = 0.5 [IQR = 0.0–0.5] vs 1.3 [IQR = 0.8–2.0]; p < .001), anxiety (median = 0.0 [IQR = 0.0–0.3] vs 0.8 [IQR = 1.1–2.0]; p < .001), activities of daily living (median = 0.2 [IQR = 0.0–0.3] vs 0.5 [IQR = 0.2–1.1]; p < .001), and sexuality (median = 0.0 [IQR = 0.0–0.7] vs 1.0 [IQR = 0.0–2.0]; p < .001). A higher proportion of treated patients achieved total scores of 0–5, representing nil to minimal impact of VLS on quality of life (98 [72.1%] vs 8 [11.8%]; p < .001). Mild and reversible adverse effects were developed in 11 patients (8.1%). Partially compliant patients were 12 times as likely to develop scarring progression than fully compliant patients (7 [22.6%] vs 2 [1.9%]; p < .001). Conclusions Long-term, individualized topical corticosteroid treatment is safe and effective in maintaining disease remission and improves the quality of life of VLS patients. Fully compliant patients demonstrate better treatment outcomes than partially compliant patients.

Vulval lichen sclerosus: An Australasian management consensus

“…Patients who remain asymptomatic are still at risk of complications including carcinoma 7 . A recently published study has shown that long‐term treatment greatly improves quality of life and reduces risk of scarring 23 . In contrast to European and British guidelines, which recommend treating only active LS during maintenance therapy, 4,8 an Australian study has shown that regular, long‐term, preventative treatment with TCS that achieve objective normality of skin leads to better disease outcomes 22 .…”

“…7 A recently published study has shown that long-term treatment greatly improves quality of life and reduces risk of scarring. 23 In contrast to European and British guidelines, which recommend treating only active LS during maintenance therapy, 4,8 an Patients should use preventative TCS treatment regularly despite being asymptomatic. 5 81% A treatment regimen using intermittent or 'as required' TCS to control symptoms only is NOT recommended.…”

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

“…Ethics approval was obtained from the Northern Sydney Local Health District Human Research Ethics Committee. A randomised controlled trial was not conducted, as there is robust evidence indicating that insufficient treatment with TCS can lead to scarring and neoplasia 4,6,7 . Therefore, the authors believe it would be unethical to conduct such a study.…”

“…VLS can be highly debilitating if left untreated, as it predominantly manifests with intense vulval pruritus, pain from excoriations and fissuring, as well as dyspareunia, thereby interfering with day‐to‐day activities and negatively impacting on quality of life (QOL) 1,2 . Inadequate treatment also increases the risks of vulval scarring, destruction of vulval architecture and vulval squamous cell carcinoma (vSCC) 3–8 …”

“…However, recent evidence has challenged this notion, leading to a paradigm shift in TCS administration from short‐term to long‐term, individualised TCS regimens. Long‐term TCS therapy was not only demonstrated to be safe but also crucial to lower the risks of scarring progression, vSCC, disease recurrence and maximise QOL in women with VLS 4,6,7,9–11 . Those who were fully adherent to prescribed regimens were shown to have significantly better disease outcomes and QOL than non‐adherent patients 4,6,7 …”