Quality of Life and Treatment Adherence in Patients with Vulvar Lichen Sclerosus

Abstract

Background: Vulvar lichen sclerosus (VLS) is a chronic, relapsing, inflammatory dermatosis that has significant impact on patients’ quality of life (QoL). While disease severity and associated QoL impact have been studied, factors associated with treatment adherence and their relation to QoL in VLS remain unexplored. Objective: To describe demographics, clinical characteristics and skin-related QoL in VLS patients, and to assess the relationship between QoL and treatment adherence. Methods: This was a cross-sectional, single institution, electronic survey study. The relationship between adherence, measured using the validated Domains of Subjective Extent of Nonadherence (DOSE-Nonadherence) scale, and skin-related QoL, using the Dermatology Life Quality Index (DLQI) score, was assessed using Spearman correlation. Results: Of 28 survey respondents, 26 provided complete responses. Among 9 patients classified as adherent and 16 classified as non-adherent, mean DLQI total scores were 1.8 and 5.4 respectively. Spearman correlation between summary non-adherence score and DLQI total was 0.31 (95% CI -0.09, 0.63) overall, and 0.54 (95% CI 0.15-0.79) when patients who reported missing doses due to asymptomatic disease were excluded. Most frequently reported factors preventing treatment adherence included application/treatment time (43.8%) and asymptomatic or well-controlled disease (25%). Conclusions: Though Qol impairment was relatively small in both our adherent and non-adherent groups, we identified important factors preventing treatment adherence, with the most common being application/treatment time. These findings may help dermatologists and other providers generate hypotheses as to how to facilitate better treatment adherence among their patients with VLS, with the goal of optimizing QoL.

Outcome Measures in Adult Vulvar Lichen Sclerosus: A Systematic Review

“…Six questionnaires that had been applied just once in VLS research were found, the EQ-5D VAS †,5 Short Form-12 (SF-12), 5 Short-Form-36 (SF-36), 24 WHO-5 d,9 WPAI:GH, d and PHQ-9 d, 42 The subtypes QoL-dermatologic and QoL-vulvar cover the QoL-LS specific COD. Within this domain 4 questionnaires, the Skindex-29, 5,6,43 DLQI, 7,9,30,41,43 DSQL-V d , 16 and Vulvar Quality of Life Index (VQLI) 10,31,33,37,38,44 have been…”

Survey analysis of patient satisfaction and sexual issues in the management of vulvar lichen sclerosus

“…Topical steroids are the recommended rst-line treatment, with 60-70% of patients achieving complete remission [5,6]. Alternatively, topical calcineurin inhibitors and complementary procedures such as photodynamic therapy have been described [7].…”

“…Studies have shown that VLS therapy can effectively reduce symptoms. However, overall patient satisfaction is moderate [5,10,11]. One-third of patients with VLS experience a signi cant reduction in health-related quality of life [10], and some women with VLS may continue to experience sexual dysfunction and less satisfying sexual activity even with treatment [12].…”

Patient satisfaction and sexual issues in vulvar lichen sclerosus treatment: a monocentric certified dysplasia unit survey analysis

“…Topical steroids are the recommended first-line treatment, with 60–70% of patients achieving complete remission [ 5 , 6 ]. Alternatively, topical calcineurin inhibitors and complementary procedures such as photodynamic therapy have been described [ 7 ].…”

“…Studies have shown that VLS therapy can effectively reduce symptoms. However, the overall patient satisfaction is moderate [ 5 , 10 , 11 ]. One-third of patients with VLS experience a significant reduction in health-related quality of life [ 10 ], and some women with VLS may continue to experience sexual dysfunction and less-satisfying sexual activity, even with treatment [ 12 ].…”