Quality of life in Dutch women with lichen sclerosus

Background Lichen sclerosus (LS) is a chronic inflammatory skin disease. Earlier studies have shown an impaired health-related quality of life (HRQoL), but more extensive research including generic questionnaires has not been reported. Objectives To investigate, in a cross-sectional study, the HRQoL of a sample of Dutch women with LS; to compare the resulting HRQoL data with that available from other skin diseases and the general Dutch population; to explore factors that may influence the HRQoL. Methods Female members of the Dutch LS Foundation and Support Group filled out three questionnaires electronically: the Skindex-29, the SF-12 and the EQ-5D visual analogue scale (VAS). We distinguished Skindex-29 scores into groups with 'little' (score 0-24), 'mild' (25-31), 'moderate' (32-43) and 'severe' (44-100) impact on HRQoL. We compared differences using the Mann-Whitney U-test and the Kruskal-Wallis test, and correlations using Spearman's rank correlation coefficient. Results A total of 262 women with LS were included. The average diagnostic delay was 4.9 (SD 7.1) years. Patients had a mean total Skindex-29 score of 38.4 (0-100, SD 17.2). Domain scores for symptoms, emotions and functioning were 46.8 (SD 19.0), 38.2 (SD 20.2) and 33.6 (SD 19.3), respectively. The SF-12 showed average PCS-12 (physical component) and MCS-12 (mental component) scores of 47.7 and 48.5, respectively. For the Dutch population these scores were 49.3 and 52.3. The mean EQ-5D VAS scor Conclusions There is a considerable delay in diagnosis for female Dutch patients with LS. The Skindex-29 domain scores showed a moderately impaired HRQoL. Women with LS reported a lower generic HRQoL than the average female Dutch population.