title: Quality of life in Dutch women with lichen sclerosus.
abstract: 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.
  
  
  OBJECTIVE
  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 score was 74·1 (SD 15·4).
  
  
  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.
authors.affiliation: Department of Dermatology, Havenziekenhuis, Rotterdam, The Netherlands.
authors.forename: C A
authors.initials: CA
authors.lastname: Lansdorp
authors.forename: K E
authors.initials: KE
authors.lastname: van den Hondel
authors.forename: I J
authors.initials: IJ
authors.lastname: Korfage
authors.forename: M J
authors.initials: MJ
authors.lastname: van Gestel
authors.forename: W I
authors.initials: WI
authors.lastname: van der Meijden
mesh_terms: D000328:Adult; D000368:Aged; D003430:Cross-Sectional Studies; D057210:Delayed Diagnosis; D005260:Female; D006801:Humans; D018459:Lichen Sclerosus et Atrophicus / Q000175:diagnosis / Q000523:psychology*; D008019:Life Style; D008875:Middle Aged; D009426:Netherlands; D011788:Quality of Life; D057566:Self Report; D011795:Surveys and Questionnaires; D055815:Young Adult