Quality of life and treatment adherence in patients with vulvar lichen sclerosus.

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.